Almost all of us will be touched by cancer during our lives. You might be the patient or it could be your parent, grandparent, cousin, sibling or friend. One of the things we know is that cancer is a family disease. When a patient is diagnosed, the entire family and social support network is affected.
Sometimes I think that with something so common, we would all be adept at figuring out what to say and do when someone is diagnosed with cancer. With all these opportunities to learn, we might expect that others would have just the right words of comfort. As it turns out, that is often not the case. What should you say? What should you do? How do you respond? Unfortunately, there is no simple answer because patients with cancer are not generic. They are a diverse group of people with unique issues and concerns and each person brings his or her own needs to the experience.
There is probably only one universally accepted sentence that everyone with cancer might like to hear and that is, “Oh, it was a mistake, you don’t have cancer after all.” Short of that, responses must be tailored to the needs of the individual. So here are a 10 dos and don’ts to get you started:
- Communicate interest in understanding what the patient is experiencing. Living with cancer can be an emotional roller coaster. This is a time when expressing your understanding is especially appreciated from those closest to the patient but be mindful that not everyone wants to talk about the experience all of the time.
- Listen actively and without judgment. Be open to hearing what the patient has to say. Show understanding by nodding, making eye contact and acknowledging the meaning of their words.
- Recognize that intense emotions are appropriate responses to this experience and allow people to have them without shutting them down, cutting them off or withdrawing. Communicate your willingness to “hear” these emotions without judging them.
- Remember that this person is more than a patient with cancer. Some people want to talk about the cancer experience a lot, others less so. Recognize and respect the limits that a person sets regarding how much or how little to talk. Be cognizant that their comfort in talking will be bolstered by open and honest communication. If you don’t know what they need, ask!
- Allow room for their normal, non-medical life. Sometimes patients feel that their whole lives have been consumed by cancer. When a patient feels this way, it helps to be distracted by other things. Take cues from the patient about how much talk there should be about cancer and non-cancer topics.
- Bring humor if appropriate. Levity can change moods, lighten loads and help the patient to connect to those things in life that are not usually associated with cancer. Find ways to bring joy or meaning into the person’s life.
- Offer concrete assistance such as running errands, preparing a meal, driving to the doctor’s office, picking up prescriptions, dry cleaning and/or childcare. Be as specific as possible. Stay away from, “Call me if you need something.” Rather, ask if there is something specific and make suggestions of things you can do.
- Organize! Create a “meal club” in which a group of families/friends makes home cooked meals and delivers them each night of the week. Create a “transportation team” by identifying key people who are available to drive to and from medical appointments. Create a phone/email tree to help communicate information that unburdens the patient or family.
- Be honest. When feeling nervous or unsure of what to say, “I am scared of saying or doing the wrong thing, but I really care about you and I want to be here for you. I’m open to helping you in any way you need.”
- Recall pleasant memories. If there are favorite stories or shared experiences that have brought closeness, see if they continue to be comforting, helpful or uplifting.
- DO NOT burden the person with stories of people who have had cancer or died of cancer or tell them how to manage their disease, unless the patient actively solicits this information. It can be overwhelming and not relevant.
- DO NOT assume knowledge of how a patient feels or what course their life should take. How one experiences cancer is individual and can only be defined by that person.
- DO NOT trivialize a person’s feelings. This can happen when attempts are made to reassure someone. For example, for a patient who has lost her hair it may not be comforting to be told that her hair will grow back. It does not acknowledge the current feeling of loss.
- DO NOT be afraid to talk about their religious faith, but do not push views or beliefs onto them. A cancer diagnosis draws people back to the basic issues of life and core questions of existence to which all religious traditions speak. Cancer has deep spiritual implications and can mark the beginning of a new chapter in one’s spiritual journey which may lead to a renewed and strengthened faith.
- DO NOT avoid the person because of personal feelings of helplessness, discomfort or lack of knowledge.
- DO NOT believe that having all the “right things to say” is what is most important. Communicating love and concern and willingness to be present is one of the greatest gifts.
- DO NOT have a preconceived idea about how a person should respond to a cancer diagnosis. Expecting a patient to be crying and sharing their deepest feelings may be inappropriate as can having the expectation that they should be feeling optimistic and hopeful.
- DO NOT do more for the patient than he or she is comfortable having others do. Being treated like an invalid when one is not can be degrading.
- DO NOT unknowingly create situations that the patient must take care of your needs or feelings.
- DO NOT tell them to have a “positive attitude” or tell them that they will get better with a positive attitude. Attitude does not change the course of cancer.
Anne Coscarelli, PhD is a practicing licensed psychologist who has had a 30 year career in the psychology of cancer. She is currently the Founding Director of the Simms/Mann – UCLA Center for Integrative Oncology at UCLA’s Jonsson Comprehensive Cancer Center, as well as an Adjunct Professor of Medicine for the David Geffen School of Medicine and a Clinical Professor at UCLA. Dr. Coscarelli actively counsels patients and families with cancer and develops programs to optimize wellness. She believes that with a cancer diagnosis, medicine is not enough. For more information: www.SimmsMannCenter.ucla.edu