“I don’t know what I need. I just know I need something.”
The mental toll of cancer can be debilitating. It is lonely, isolated and monstrously difficult, for both the patient and the family unit. The recent survey by Texas Oncology, “Every Body Has a Story,” reveals the hidden impact of a cancer diagnosis and treatment on a patient’s mental health. The breakdown of the survey is available at Texas Oncology and shows the staggering results and the hesitancy of cancer patients to reach out for emotional, mental and spiritual support, particularly men where less than 50% relied on family or friends for support. Yet, 70% of those surveyed said they experienced symptoms of depression and 65% experienced anxiety. This survey is helping raise awareness for the need for support beyond medical treatment for cancer patients and how others can provide the much needed aid for their loved one going through treatment.
“Reading the results,” said Dr. Chakmakjian of Texas Oncology–Waco, “I was more sensitive to somebody I saw this morning who was really concerned about hair loss with treatment and how that physical change is going to impact her life.” Carl Chakmakjian, D.O., FACP is a medical oncologist and is there for the patient for the diagnosis, treatment plan and overall care. After 17.5 years in the field, Chakmakjian praises the awareness that such studies can bring to the cancer community and the world.
Alongside the medical care, Stephanie Broussard, LCSW-S, APSW-C, directs clinical support and consistently brings additional emotional, mental, behavioral or spiritual support services for cancer patients. Helping people in this time isn’t just palliative care, she said, “It’s an honor to be able to serve alongside amazing social care workers and physicians who are constantly looking to do the best thing for their patients.” As a licensed clinical social worker and the Director of Palliative Care and Social Work at Texas Oncology, the goal is straightforward; to “ensure that patients who are navigating the life-altering experiences of having cancer get access to support.”
The ability to drive what happens in this space, Broussard said, is important because Texas Oncology focuses on “patient-centered care.” Even with family there, it’s important to keep the patient at the center. “I have patients tell me all the time, ‘I don’t know what I need. I just know I need something.’ They may not clearly identify or articulate what their need is or where the pain points are,” Broussard explained. “What’s important is letting your loved one drive what support looks like for them. Ask them how they would like for you to serve.” Whether you’re a caregiver, a friend, a loved one or a child, it’s vital that everyone is working towards the same goal. For the first step, “it’s important for people to acknowledge that there are amazing challenges and give people permission to engage in support systems and not necessarily know what they need. They feel like they don’t know what to do. [And] that may take some time to figure out. If they don’t know, be okay with that, it doesn’t mean they don’t want you there. They may not know what would give them comfort in that way. They set the tone. They may not always want to talk about their cancer. Create a space for when they are ready, allowing them to have the security of not being judged by their thoughts or feelings.”
The worst thing you can do is take over and end up stifling the patient’s voice. The focus “is all about the patient”, Broussard emphasized. Don’t negate the patient. They come first, they are at the center. Many times, the biggest hurdle is simply being able to “process what they’re thinking, the things they don’t feel comfortable saying out loud to their families because they don’t want to scare them.” This is a very common and valid fear, and “a lot of times they are focused on the people around them, [but] they need someone to focus on them.” When it comes to decision-making, so many patients are focused on what their loved ones want.
Dr. Chakmakjian explained how important intentionality is. “The question has to be worded not as, ‘What do your kids want you to do?’. It’s ‘What do you want to do? Make a choice that you think is right for you. You don’t have to take treatment for your kids. If you take treatment, this is for you.’” This intentionality is what Chakmakjian and his team work hard to protect. He’s part of Texas Oncology’s weekly multidisciplinary “Tumor Board” that hosts everyone from the cardiothoracic surgeons and radiation oncologists to the lung doctors and pathologists who collectively review new cases and brainstorm treatment plans to allow the patient to make an informed decision on what is best for them. “The patient can choose to do it or say, ‘No, this isn’t right for me, but I’d like to do this part.’”
The trifecta of medical professionals and support groups is only strengthened by the support of loved ones. Patients lean on their friends, family, spouses and children and Broussard is the first to admit that the role of the family cannot be undermined. It’s easy for both patients and doctors to get focused on the wrong thing during such a difficult time, Chakmakjian explained. “But there are so many other facets of the patient’s care that really haven’t been addressed. The overall well-being of the patient, in my own opinion, can expedite recovery.” Sometimes, he explained, it’s easy to think that medical help will fix everything and to focus on the “science of treating the disease.” But oftentimes, “Patients rely on their support system and their family and friends more than they rely on us. We might not be as important as we think,” he laughs.
Broussard agrees. “You can’t fix cancer.” The family support system is as essential as the clinical team. You simply can’t have one without the other. The value of family is special, it is simply a matter of different roles and skill sets. This is part of what Broussard does every day, encouraging and equipping the family and facilitating conversations so that the care team does what is best for the patient, whether it’s counseling for the family or partnering with organizations to help children learn to process and understand cancer.
As both the patient and their loved ones grieve lost experiences, changed relationship roles and the impact on the family unit, the support of family is integral to the patient’s journey. The needs vary from patient to patient. It could be very different based on where people are and what their needs are, but the focus remains on creating spaces for all emotions, including anger, fear, uncertainty or gratitude.
“I can’t say enough about how important communication is,” Broussard said. Even if it is difficult to “literally verbalize a need. That doesn’t mean they don’t need you to step up. That can look like having someone’s car washed, dropping off meals, running to the grocery store, sitting in silence, listening to music, doing some activity for distraction or assisting with activities of daily living.” The journey can look different for many people.
It’s such a dynamic time for them but Chakmakjian tries to make sure that family is there, either on speaker or FaceTime or in-person. When a healthy person comes to Chakmakjian “with an abnormal mammogram or colonoscopy, then you’ve got 20 appointments. Going here for a biopsy, here for a scan, here for Oncology, here for radiation… it’s so overwhelming and they might hear one word that freezes them… you hear the word ‘cancer’ or the ‘C’ word, ‘incurable’ or ‘hair loss’. They lock in on that word.” This is the exact moment that the value of family and friends comes in with an extra pair of eyes and ears.
Texas Oncology acts as a launching board, guiding patients to support, making sure the family is responding well and pointing patients in the right direction. It’s a difficult thing to address cancer treatment that Chakmakjian described as a “multi-headed monster”. Sometimes mental health can’t be addressed because of time constraints. Perhaps a patient isn’t comfortable addressing mental health with a physician or there is a shortage of mental health professionals today or it’s something else. It adds to the monstrosity of the ordeal, Chakmakjian said. “They might not want pharmacologic intervention because they’re already on 20 medicines and they don’t want to be on 21 medicines.”
The Texas Oncology Foundation is currently working to expand support services across the state. Whether in the form of support groups, conferences, camps, connecting to social workers at other hospitals, providing lists of resources, workshops for journaling, intimacy counseling, virtual meetings, yoga or loved ones attending patients’ appointments, it’s important to have friends and family during the patient’s journey.
So many people are hesitant to reach out to seek support in their cancer experience. The fear of talking about it, of acknowledging that it’s really happening and the fear of putting a burden on their loved one as well as the stigma in society that makes one want to isolate themselves for fear of judgment make it difficult for patients to reach out for help. Surveys like Texas Oncology’s “Every Body Has a Story” are opening the discussion and bringing much needed resources to patients and their loved ones. “We have to create a narrative where we make it safe for them to be vulnerable, express their feelings of distress, depression, anxiety, fears or worries,” Broussard said. It applies to the family support system, to friends, to neighbors and to all community and societal practices. Mental well-being isn’t gender assigned or a taboo topic. “People need support. There are all kinds of suffering that they experience as part of their human experience. To be able to help alleviate any of that is indeed an honor and a privilege. Every human having a human experience should be gifted with the opportunity to live well.”
