By Lillie Shockney, RN, BS, MAS
As the administrative director of the Johns Hopkins Breast Center for nearly two decades and the director of Johns Hopkins Cancer Survivorship programs for our cancer center, I made a conscious decision to incorporate patients with metastatic cancers into our survivorship programs, and not exclude them, as commonly happens. Some patients live for years with their disease, while others may succumb to their cancer after a short period. My specialty is metastatic breast cancer from a clinical and research perspective, focusing on preserving quality of life.
Each woman has life goals that need to be discussed. Their most common concern is leaving their children behind; they fear there will be no one to instill their values, express the love only a mother can show, and most of all, be remembered by their children.
One way to fulfill their hopes for their children and themselves is to provide a selection of cards that are sent by a ‘keeper of the cards’ after their death. These cards can convey their thoughts for their children’s milestones – birthdays, communion, bar mitzvah, getting their driver’s license, graduating from high school and college, marriage, and their first child. The hand-written words in these cards help ensure that they will always be remembered and will allow them to express their wisdom and love.
A few summers ago, I received a call from a 24-year-old woman whom I had never met. “Anna” told me that I took care of her mother 14 years ago, when she was just 10 years old herself. Her mother died of stage 4 breast cancer that year, and was in and out of the hospital a lot during the last few months of her life. Anna had overheard her mother tell her Aunt Sarah that, “Lillie said to do this and Lillie said to do that,” but she never understood who Lillie was until her mother passed away and Aunt Sarah became the keeper of her cards. Then, with each milestone of her life, she received a card from her mom.
Anna said she loved seeing her mother’s handwriting and words of wisdom, hope for her future, and motherly compassion. She told me that when she got married a few weeks before our call, her aunt had placed her bridal veil on her head and handed her a card from her mom. The edges of the envelope were yellowed after 14 years. She opened it, saw a beautiful card, and her mother’s handwriting inside.
She read to me what her mother had written to her: “I know you would have chosen wisely someone you deserve to spend the rest of your life with. Marital advice: Don’t ever go to bed angry with one another. Whatever it is can be talked through. When your dad lifts your veil and kisses your right cheek, you will feel me kiss your left.”
Anna told me, “Miss Lillie, I swear I felt my mother’s kiss. I have always felt her presence through these cards she left for me. Thank you for enabling my mom to always be in my life.”
I told Anna that if she planned to have a family, she also would receive cards when she becomes pregnant the first time and when her baby is born, and would also receive a cassette tape of her mother reading children’s stories so that her child would know his or her grandmother’s voice.
I have organized this card program for a long time as one way to support patients approaching their end of life. We need to help patients fulfill their goals rather than just saying, “I am sorry you will miss the milestones of your children’s lives. I hope you are not forgotten.”
Dying in pain can be effectively prevented with early palliative care. When you talk with your metastatic cancer patients, consider asking them what they are most worried about. Also consider holding a card drive where people donate cards for your patients. These cards are a powerful way to help patients maintain their family connections and feel confident they will impact their children’s lives for decades to come. That gives them one less thing to worry about as they prepare for death.
Lillie Shockney, RN, BS, MAS, is university-distinguished service professor of Breast Cancer; administrative director, the Johns Hopkins Breast Center; director, Cancer Survivorship Programs at the Sidney Kimmel Cancer Center at Johns Hopkins; and professor, JHU School of Medicine, Departments of Surgery and Oncology. She can be reached at shockli@jhmi.edu.
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