Being diagnosed with a terminal illness is traumatic. But sometimes, what people say in an effort to offer comfort is equally distressing.
The truth is, many of us just don't know what to say to a loved one who is facing their mortality.
"Most of the time I really liked when people said nothing," notes Michelle Colon-Johnson, who has been diagnosed with stage four cancer five times and survived. "If I wanted to talk about the cancer, it felt good to know I could talk to others, but I never wanted to be treated differently."
Experts who assist patients in their final days say the best thing to do for someone who has recently been diagnosed is to allow them to guide your conversations and actions.
"They might not want to talk," explains social worker Edie McCaddin-Bower, vice president of support services at Beacon Hospice. McCaddin-Bower says it's important to respect the patient's wishes, but let them know you're willing to lend an ear to hear their thoughts, wishes and fears whenever they are ready. Fellow social worker Meredith Cinman, ancillary services coordinator at Amedisys Hospice in Valenica, CA, adds that loved ones should try not to worry about saying the "right thing" but spend more time listening to the patient.
What NOT to Say to Someone Who Is Dying
"Avoid platitudes," adds psychiatrist, Huffington Post blogger and author Marcia Sirota M.D. "Saying things like, ‘Everything happens for a reason,' and ‘It's God's will,' can make the person feel like (their illness) is their fault." Trying to reassure a patient they'll be o.k. can be hurtful because they know it isn't true, continues Dr. Sirota. She adds that saying things like ‘You're strong, You'll get through the illness' is equally problematic. "Maybe they don't feel strong and need to feel like they can be afraid. You need to give them the space for their fears."
Gestures Speak As Loud As Words
Dr. Sirota's advice to family members and friends is give the patient as much emotional support as needed and tell them you love them and are available to help as best you can, then work to make the patient's last days as easy and comfortable as possible. In this respect, Dr. Sirota says, don't wait for the patient to ask for help because they might be overwhelmed. Go ahead and prepare dinner for the patient, offer to clean their house, shop for them or go with them to doctor appointments. But be sure to follow through. If you say you're going to do something, do it.
"The greatest gift to give is the gift of time," stresses Nancy Sherman, director of bereavement at Bertolon Center for Grief and Healing at Hospice of North Shore and Greater Boston. "If you live close enough, you have the opportunity to demonstrate your support by being there." During visits, rent a movie and make popcorn, play games or just sit quietly with them. If faith is important to the patient, consider praying together or reading the Bible. "Your willingness to do this says, ‘I'm willing to walk this difficult road with you.'"
If you're unable to visit a terminally ill relative or friend, stay in touch through emails, phone calls, notes and cards. "Use this time to tell your friend or relative how much they mean to you," Sherman adds. That could be recalling funny stories or important moments in your relationship. The goal is to make sure nothing is left unsaid.
Spending Time With a Loved One in their Final Days
Mercia Tapping and her husband talked openly about his impending death after he was diagnosed with terminal brain cancer. "We faced his disease head on and squeezed the last out of his life together," she recalls. Her husband died at home in September, 2011 after a two year battle. "He tried to take care of me as best he could and we discussed all aspects of his burial and funeral. He wanted me to deliver his eulogy and I did. Because we faced this so openly together I have no regrets and nothing was left unsaid or undone, which makes his death painful but complete."
Katrina Kritz is dealing with a similar situation as she watches her mother's body deteriorate from congestive heart failure. "For something like this there is nothing to say except, ‘I love you,'" says Kritz. "I tell my mother all the things which I never had the time to tell her before. I hold her hand and stroke her hair and massage her feet. I can't imagine what she feels or what her thoughts are so I just love her by being beside her and comforting her the best way I know how." Letting a patient know how much they are loved, listening to them and offering a hand to hold are perhaps the three greatest gifts to give to the dying. "We must talk about our fears, wishes, joys, regrets and be able to forgive before we end our time on this planet," offers Paula Shaw, who has been a grief counselor for 21 years. "Anyone who helps us do this is a gift."