Addressing psychosocial needs should be a fundamental part of quality cancer care, according to Jennifer Bires, LICSW, OSW-C, executive director of Life with Cancer at the Inova Schar Cancer Institute in Washington, DC.
“The physical needs of patients are important, but we really need to pay attention to the whole person,” she said at the AONN+ 2020 Virtual Midyear Conference. “We can’t just separate these things out.”
She stressed the importance of really getting to know patients, particularly in the age of the COVID-19 pandemic when patients may be behind a mask or at the other end of a Zoom call. “Things move so rapidly within the healthcare system, and we’re expected to see a lot of patients,” she said. “But it’s important that we take into account all of the things that may impact a person during their diagnosis.”
These issues might be psychological, social, spiritual, physical, emotional, practical, or informational, but no matter what they are, they can weaken adherence to prescribed treatment and can threaten patients’ return to health. “We can’t just learn about these things once,” she added. “Because they change throughout treatment.”
What Is Distress?
The National Comprehensive Cancer Network (NCCN) defines distress as “a multifactorial, unpleasant experience of a psychological (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.” According to Ms Bires, approximately one-third of patients with cancer will suffer significant distress, and two-thirds will experience some distress.
She finds that explaining the body’s acute stress reaction can be helpful to patients. The sympathetic nervous system becomes activated when we experience distress, resulting in the release of a cascade of stress hormones throughout the body that in turn cause symptoms like muscle tension and increased heartbeat, as well as a release of cortisol that can interfere with recall (this is why many patients forget what was told to them in the doctor’s office).
“This is a physiological response, and I think that’s really important for patients to know, because there’s no judgment associated with it,” she said. “They’re not doing something wrong or right; it’s an evolutionary response designed to keep us safe.” When this response is too heightened, understanding how the sympathetic nervous system works can help patients to better understand, and in turn change, their behavior, because having these stress reactions over and over in the form of chronic stress can wreak havoc on a person’s health.
The body’s stress response adds a significant burden to the already profound effects of cancer and its treatment. It can impact behavior (eating too much or not enough, crying, feeling lethargic), physical health (muscle aches, headaches, sexual dysfunction), cognition (impaired memory, confusion, decreased sense of humor), and can lead to adverse psychological states characterized by increased anger, depression, anxiety, pessimism, and irritability.
Assessing and Recognizing Distress
Patients should be screened for distress throughout the cancer care continuum (this can be carried out through a number of different distress tools, such as the Chronic Illness Distress Scale or the NCCN Distress Thermometer), and should then be directed to the care they need. However, validated instruments are only one way to assess distress; the individual assessment skills possessed by providers are just as important, if not more, she said.
“We all know our patients are complicated; they are not just numbers on a screen,” she said. Individual assessments should take into account factors such as a patient’s history of mental illness, disease stage, medications, and treatments, as well as any unhealthy coping mechanisms (or, conversely, a history of healthy coping mechanisms). Providers should also trust their own observations of patient appearance and behaviors.
Cancer carries with it an elevated risk of depression, which can impact an individual’s ability to keep up with their treatment. Anxiety is also extremely common among patients and is a uniquely human response to a perceived threat or danger, such as cancer. “After a cancer diagnosis, a lot of our patients lose a sense of innocence; a sore throat may no longer just be a sore throat; a back ache may no longer just be a back ache,” she noted. “Anxiety is probably the thing I see most often in my patients. If someone tells me they’re not anxious at all, I almost don’t believe them.”
Other adverse psychosocial side effects, such as brain fog and insomnia, can arise in patients and can profoundly impact their quality of life.
Ms Bires noted that many of the effective treatments for these symptoms are similar, such as relaxation techniques, exercise and nutrition, talk therapy and medication, and can be widely beneficial to patients with various psychosocial needs.
Caring for Patients and Remembering Self-Care
In addition to the potential impact on patient outcomes, providing care to patients who are struggling with issues related to mental health can be time-consuming and exhausting for providers, because these patients tend to require more attention.
When caring for these patients, try to remove emotion, she said. Pause at the door and take a few deep breaths before going into the room. “We do a lot of mirroring, so if a patient is really anxious, those same feelings may come up in ourselves,” she said. “If we can remain calm and try not to be reactive, often the patient will mirror our feelings instead of us mirroring theirs.”
Try not to minimize patients’ emotions. Listen, validate, and ask them questions, but remember that it is perfectly reasonable, and encouraged, to set limits and expectations with them. And as teams, it is important that we support each other when caring for these patients, she added.
With particularly difficult patients, remember that “No” is a complete sentence, she said. Clear communication is vital, but providers should keep a level tone of voice, resisting the urge to roll their eyes or put their hands on their hips, always remembering to control the fight-or-flight reaction they may be experiencing within themselves.
When it comes to mental health, effective treatments are available to patients, and for some, they can be incredibly valuable, she added. But sometimes patients just need to be heard, and to really know someone is listening.
“As healthcare providers, our first instinct is often to fix things, but sometimes things can’t be fixed,” said Ms Bires. “Listening is a skill, and the function of listening is to understand what the other person is saying, not necessarily to agree with it. Sometimes just being present can make all the difference.”
