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Talking with Children About the End of Life

TON January 2016 Vol 9 No 1 - Palliative Care

Boston, MA-When a parent has cancer, children can experience an array of psychosocial changes, according to Paula K. Rauch, MD. However, providing parents with the guidance they need to converse and interact with their children at the end of life can alleviate the entire family's suffering, and is an important aspect of palliative care.

Approximately 3 million children in the United States live with a cancer survivor, and more than 18% of patients with cancer have dependent children. Death of a parent in childhood can have a serious impact on a child's health and well-being.

Multiple studies show that cancer patients who have minor children experience greater stress, depression, and anxiety, as well as decreased quality of life and satisfaction in their parenting. Child adjustment can be affected by factors such as illness-related parental disability, and parental depression or anxiety. Survivors with children are also typically more worried about recurrence.

Dr Rauch and her colleagues at Massachusetts General Hospital in Boston developed the Marjorie E. Korff PACT (Parenting At a Challenging Time; mghpact.org) Program to provide parents with cancer, and their partners, with the skills and confidence to continue providing the very best for their children throughout their serious illness, and to ultimately ensure that their children continue to thrive in spite of it.

Dispelling the Myths and Engaging with Children

"Every parent facing a life-threatening illness deserves expert, timely, and practical guidance to support the emotional health of their children," Dr Rauch said at the recent Palliative Care in Oncology Symposium. "But, I've spent many years trying to figure out how that could even be possible across many different settings."

She emphasized the importance of dispelling some of the myths that can make parents and families feel they're not dealing with the impending death of a loved one "correctly."

"One of the common myths is that 'everything you live through makes you stronger' -but of course that's not true," said Dr Rauch, director of the PACT Program and the Timothy Christopher Davidson Endowed Chair in Psychiatry at Massachusetts General. "Many kinds of trauma make people feel more fearful going forward. That's true for children as well, and when we're engaging with families and with parents in particular, our goal is to prevent a transgenerational trauma."

"We don't want to pass on the sense that the future is frightening, but rather that the child is armed with the skills they need to face the future," she said. "We know that when anxiety is high, it's hard for children and adults to cope, but confusion and fear are the enemies of coping."

"Protecting children doesn't mean excluding them," she added. "And 'just be honest' is not enough because parents don't know what to say-then need our help with the real words, and that's part of what our website provides and what our interventions do."

She stressed that open communication is best, as bereaved children often wish they had been told about a parent's illness. PACT provides guidance for parents and their children through all developmental stages (infancy, preschool years, elementary school years, and adolescence), as children react and cope differently during each of these periods, and each holds its own unique challenges.

"There are many surprises in life, but having a parent die is not one of them," said Dr Rauch. "So most of us feel much better knowing there's a period of time for adjustment."-MB

Reference

Rauch PK. End of life care: talking with the children. Presented at: 2015 Palliative Care in Oncology Symposium; October 9-10, 2015; Boston, MA.

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Last modified: September 9, 2019