Editor's note: In the companion commentaries that follow, Dr. Csaba L. Dégi and Dr. Fay J. Hlubocky offer perspectives on addressing the psychosocial needs of patients impacted by cancer and war, practical advice on communicating effectively and empathetically, and provide resources for physicians caring for patients with cancer in Ukraine and neighboring countries. Find a quick-reference list of scripts and resources at the bottom of this page.
Disaster Survivorship With Cancer: A Double War
By Csaba L. Dégi, PhD, MSW
The war on cancer has been at the center of cancer policy and treatment in many parts of the world in recent decades. It takes us from tumor-centered oncology to integrative oncology, from patient to survivor. It is a highly personalized war that we have come to know better and better, from people to communities. Over time, it has conquered important milestones in cancer prevention, early detection and diagnosis, innovative treatment, and quality of life in oncology. But what happens when a military war with guns, bombs, and human disaster is the place to confront and treat cancer and survive cancer through war trauma? This double war is going on right now in Ukraine and neighboring countries like Romania, Hungary, Poland, and Moldova.
In 2020, more than 162,000 people in Ukraine were diagnosed with cancer, and nearly 85,000 died from it, according to data from Ukraine's National Cancer Registry. It is estimated that more than 10,000 people from Ukraine now carry their cancer in armed war zones, while fleeing war, or in refugee shelters across Europe. We are witnessing the horror of this war, and at the same time, we are engaged all over the world in many forms of practical assistance and virtual support. Helping those affected by cancer and war, supporting them to alleviate the double burden of suffering, must be part of this progressive universalism that we have seen blossom in the last 3 weeks. We must remember that in this traumatic situation, where the satisfaction of basic physical needs is undeniable, we must also consider psychosocial needs, especially in the case of oncology. The needs of the human being and the patient's needs when beating cancer must be the same, emphasizing the psychosocial aspects.
The International Psycho-Oncology Society, representing psychosocial professionals from more than 110 countries, recognizes psychosocial cancer care as a universal human right. We believe that cancer distress should be measured as the sixth vital sign, along with temperature, blood pressure, pulse, respiratory rate, and pain. We advocate for this international standard for quality cancer care in planning psychological first aid, trauma support and intervention, and palliative care for patients with cancer and caregivers in Ukraine's humanitarian crises. Psychological support at a distance, by phone, app, or virtually, and in-person support whenever possible are ways to address the emotional distress of cancer and war. In addition, there needs to be psychosocial support for patients with cancer, their families, and oncology staff in Ukraine and neighboring countries that provides a sense of psychological safety and connection and offers hopeful or reassuring perspectives.
At onco-help.org, you will find resources that lead medical personnel and patients with cancer to real-time information and contacts in several languages, in Ukraine and much of Europe. Additional resources for patients and providers are available at asco.org/ukraine.
Dr. Dégi is a member of the Board of European Cancer Organisation (ECO), secretary of the International Psycho-Oncology Society, and an associate professor and researcher at Babeș-Bolyai University, Romania. He is a volunteer on the ECO-ASCO Special Network on the Impact of the War in Ukraine on Cancer.
Communication With Your Patients Regarding the Trauma of War and Cancer: What to Do, How to Support, and Maintain Your Well-Being During the Ukrainian Crisis
By Fay J. Hlubocky, PhD, MA
Communication with patients who have cancer has always been an important skill, yet, coupled with patient-related traumatic experiences that have arisen due to the current war and subsequent displacement, it can become a complicated, challenging task. In addition to holding complex discussions over war-related modifications of cancer treatment, disease progression, or symptom burdens, newer concerns over the immediate war-related emotional impact for the patient arises. In the absence of psychosocial support resources, oncologists now find themselves simultaneously addressing the direct oncologic and mental health needs of patients contributing to oncologist workload and stress. “What do I say to address this unique suffering? How might I provide support?” are common questions oncologists in Ukraine and neighboring Eastern European countries have asked. These discussions require a multifaceted, trauma-informed cancer care approach that will serve as a direct response to support patients in their care, strengthen their trust and relationship with you, and bolster their long-term psychosocial and cancer outcomes. Effective communication uses specific core trauma-informed principles involving reassurance, safety/security, collaboration, trust, and empowerment as oncologists care for patients in Ukraine or in neighboring host countries. This communication involves a realization, recognition, and response to the war and cancer-related trauma that patients experience. Providing collaborative compassionate, empathic support via either formal verbal or nonverbal communication is a key to healing in trauma. It is especially important that oncologists understand how to help guide patients experiencing cancer and war through exceedingly difficult phases during their care. The communication strategies provided below may both aid your discussions with patients and maximize your well-being during this challenging time.
The first step is to realize the impact that war-related trauma has on patients with cancer. Trauma occurs as a direct response to a single, or multiple, event(s) that adversely affect the individual’s well-being. For patients with cancer, they must now simultaneously cope with the effects of this prior cancer-related trauma exposure and war-related trauma symptoms. Research indicates that patients with medical conditions may suffer severe long-term emotional reactions to war-related trauma such as depression, generalized anxiety, and post-traumatic disorder. Those who report, and exhibit, minimal symptoms may experience greater long-term distress. Several protective factors can lessen the impact of trauma including the individual’s coping style, hope, resilience, social support, religion, and a strong therapeutic alliance with you. Foster trust with the patient by providing support. Reassure the patient that they are safe with you. This can be challenging during wartime where the noise of explosions, sirens, and destruction is obvious and unrelenting. For the patient who fled Ukraine and comes to you for cancer care after leaving home, country, family, and oncologist, reassure the patient that they are safe with you and your oncology team: “You are safe here with us in this moment. We are here to help you.”
Next, recognize that the trauma experience is different for every patient with cancer. Patients tend to suffer emotional, cognitive, physical, behavioral, and social reactions. These are normal if not unexpected reactions to the trauma. Patients vary in both their emotional reaction to, and communication about, the trauma of war as a person with cancer. Emotions may be intense, powerful, and include anxiety, sadness, fear, anger, survivor guilt, and numbness, while others will undergo delayed emotional responses including avoidance or grief. Address the patient’s feelings by naming this specific emotion that you are witnessing to express empathic understanding of the patient’s situation: “I can see that you are sad…fearful…angry.” Next, normalize and validate these emotions with your patient: “These feelings are natural and expected at this time given the current situation.” “This is a very common emotion.” “This is a normal reaction.”
Respond to the patient’s immediate informational needs by stating: “You are dealing with many different issues. What concerns you most?” Identify, prioritize, and address these needs, whether they be cancer-related (“Will I get treatment?”) or war-related (“Is my family safe?” “I am now homeless.”). Give them relevant information. “What is the most important information for you to know now about treatment interruption during the war?” Emotional needs may be further compounded by cancer-related distress. Reassure them that their cancer and treatment needs will be addressed as best as can be given your/hospital’s present ability and constraints: “Although your cancer surgery/chemotherapy has been delayed, we will do what we can now to address your symptoms (pain, nausea, etc) during this time.” Be prepared to frequently revisit informational needs throughout the patient’s care during wartime and the cancer: “In the past, you were dealing with many issues, what are your needs today?”
During these clinical encounters, simply assume that war-related traumatic events have occurred to the patient with cancer and proceed accordingly. Listen and encourage patients to talk about their story and reactions only when they feel prepared to speak: “Would it be too painful to tell me what your tears are about?” Avoid coercing patients to tell their story. Some patients will readily share their trauma-specific narrative with you while other patients may be unable to express their feelings in actual words as it may feel too real and dangerous to tell their story. Patient-related factors including age, gender, and culture may all impact communication. For example, the elderly patient with cancer may not share their personal story due to shame, guilt, pride, fears, or memories associated with past traumas (e.g., experience of oppression, violence) reactivated by the present war. Moreover, patients hold high esteem and respect for you as the oncologist, thus, choosing not to discuss their distress for fear that you would perceive them differently, as weak, or that you lack time. Some may experience dread or terror as the basement of a hospital, shelter, or a new hospital setting is an unfamiliar experience. Avoid the use of labels such as “war victim” or “refugee” as this may be retraumatizing for some patients. Expect atypical behaviors including refusal of a routine physical exam or a procedure/testing especially if a known physical trauma has occurred. Provide support. This will take time and patience. Respond and reassure via the statement: “It can be difficult for some people to talk about their feelings and experiences. I am here to listen when you are ready.” Recognize that the physical act of simply sitting in silence with the uncommunicative patient for even a moment can be powerful communication tool itself, not only emotionally supporting and empowering the patient, but strengthening your therapeutic relationship: “I have a few minutes to sit with you,” or “Let us sit here together for a moment.” If appropriate, encourage the patient to adopt a healthy lifestyle and coping mechanisms, including maintaining a daily routine, mediation/relaxation/breathwork, and in-person/virtual social support.
If the patient will be transferred for care, acknowledge that your clinical interactions are ending, and that the new oncology team will resume care to provide closure: “You will receive care at another hospital to continue treatment. I do not know when we will see each other again but please know it has been a pleasure to work with/help you.” Express your commitment to the patient’s care, and, if you are able to, maintain contact—but given the changing dynamic of the war, preface that contact will likely remain limited: “I will follow up with your team regarding your care. I am available for you to call me. I am here if you need me.”
Your role as oncologist in attending to and coping with this cancer care and distress first during the COVID-19 pandemic, and now, amid war and tragedy, with limited resources, takes an enormous psychological toll. We, your global oncology community, recognize that you and your oncology team are providing dedicated 24-hour/7-day cancer care in hospitals, hospital basements, or shelters during the direct conflict within Ukraine, and in reception centers and cancer center/hospitals in Poland, Slovakia, Czechia, Romania, Hungary, and other countries. Therefore, prioritizing your well-being has never been more critical. Attending to your health and well-being enables you to continue your work and adopting self-care practices enables you to practice strategies essential for coping with the current darkness. Effective trauma-informed communication is a useful tool that contributes to improving clinician well-being, yet it cannot replace essential self-care. Please take time for yourself to recharge, restore, and reenergize by asking a colleague to cover for you while you sleep or have tea. Practice self-compassion. Reframe your thoughts of “I cannot” to “I should” take care of myself during this time. Acknowledge your emotions. Sleep, even with the noise of war, is key to enhancing your focus and decision-making. Engage in physical activity if possible. Maintain your social connections virtually. Practice positive thinking strategies. Imagine how you can work through the stressors to foster optimism. Look for success beyond life’s uncertainty. This situation is temporary and one day it will end. It will take time and patience yet cultivating hope with clear goals and plans can aid your present coping even during this war.
We are here to help. ASCO has devoted efforts at establishing informational resources for patients with cancer and physicians in Ukraine and neighboring Eastern European countries. Also, ASCO partnered with the American Cancer Society (ACS) to assemble a volunteer civilian core clinician group available to provide guidance to you in Ukrainian and additional languages via phone.
You are not alone. We are here. We stand with you and applaud you for your courage and continued dedication to Ukrainian patient cancer care. We honor you. We thank you.
Dr. Hlubocky is a licensed clinical health psychologist with expertise in psychosocial oncology and a health care ethicist at the University of Chicago Medicine in the Department of Medicine, Section of Hematology/Oncology, the Supportive Oncology Program, and the Maclean Center for Clinical Medical Ethics. She is the 2022 Cancer.Net associate editor for psychosocial oncology. Dr. Hlubocky’s clinical research and educational efforts center on the impact of the psychosocial aspects in cancer care involving patients, caregivers, and oncologists across the cancer trajectory. She has training and experience in trauma-informed care in mental and behavioral health, and she has held certification as a clinical trauma professional. Follow Dr. Hlubocky on Twitter @FayUCCancerCr.
What Can I Say and Do to Help my Ukrainian Patients With Cancer During the War: Providing Optimal Trauma-Informed Cancer Care Communication
- “You are safe here with us in this moment. We are here to help you.”
- “I can see that you are sad… fearful… angry.”
- “These feelings are natural and expected at this time given the current situation.”
- “This is a very common emotion.”
- “This is a normal reaction.”
- “You are dealing with many different issues. What concerns you most?”
- “What is the most important information for you to know now about treatment interruption during the war?”
- “Although your cancer surgery/chemotherapy has been delayed, we will do what we can now to address your symptoms (pain, nausea, etc.) during this time.”
- “In the past, you were dealing with many issues. What are your needs today?”
- “Would it be too painful to tell me what your tears are about?”
- “It can be difficult for some people to talk about their feelings and experiences. I am here to listen when you are ready.”
- “I have a few minutes to sit with you.”
- “Let us sit here together for a moment.”
- “You will receive care at another hospital to continue treatment. I do not know when we will see each other again but please know it has been a pleasure to work with/help you.”
- “I will follow up with your team regarding your care. I am available for you to call me. I am here if you need me.”
Resources and Further Reading
- Center for Substance Abuse Treatment (US). Trauma-Informed Care in Behavioral Health Services. Rockville (MD): Substance Abuse and Mental Health Services Administration (US); 2014. Report No.: (SMA) 14-4816.
- VitalTalk. Get proven strategies for responding to difficult conversations.
- Back AL, R Arnold, Tulsky JA. Mastering Communication With Seriously Ill Patients: Balancing Honesty With Empathy and Hope. Cambridge University Press; January 2009.
- Comtesse H, Powell S, Soldo A, et al. Long-term psychological distress of Bosnian war survivors: an 11-year follow-up of former displaced persons, returnees, and stayers. BMC Psychiatry. 2019;19:1.
- U.S. Centers for Disease Control and Prevention. CDC Injury Prevention. Helping Patients Cope with A Traumatic Event.
- Cancer.Net. Post-Traumatic Stress Disorder and Cancer. March 2019.
- Leano A, Korman MB, Goldberg L, Ellis J. Are we missing PTSD in our patients with cancer? Part I. Can Oncol Nurs J. 2019;29:141-6.
- Log LJ, Gallagaher MW. Hope and posttraumatic stress disorder. In: Gallagher MW, Lopez SJ (eds), The Oxford Handbook of Hope. Oxford University Press; Feb 2018: 233-42.
- Cancer.Net. Resources for Ukrainian People with Cancer.
- ASCO. Information for Patients with Cancer & Physicians in Ukraine & the Neighboring Countries.
- American Cancer Society. Support for Ukrainian Patients with Cancer and Caregivers.
Originally published March 29, 2022; updated with translations April 13, 2022.