Having a medical professional specifically trained in child development on the palliative care team sets the stage for everyone on the team to feel more comfortable entering the zone of talking with patients about their concerns for their children.
—Paula K. Rauch, MD
Although the focus of an oncologist’s attention is understandably attuned to the needs of the patient, when a patient is a parent, quality oncology care should also include attention to the patient’s role as a parent and to the needs of the patient’s children, according to Paula K. Rauch, MD, Founding Director of the Marjorie E. Korff Parenting at a Challenging Time (PACT) Program at Massachusetts General Hospital Cancer Center, and Associate Professor of Psychiatry at Harvard Medical School in Boston.
Most cancer centers offer some psychosocial services for patients, and by 2015, all centers accredited by the American College of Surgeons will be required to screen patients for distress and refer patients to psychosocial services when necessary. However, these institutions often do not have palliative care or oncology teams that include mental health clinicians trained in child development to assist patients who have children.
The medical team of the PACT Program, now in its 15th year, includes child psychiatrists, child psychologists, and oncology social workers who provide free psychoeducational support for parents who are patients at the cancer center. The program offers individual consultations for parents with cancer and/or healthy parents or partners on how to prepare their children for their parents’ cancer diagnosis, treatment, and end-of-life decisions.
The ASCO Post talked with Dr. Rauch about the importance of informing children about a parent’s cancer diagnosis, the questions the oncologist or palliative care specialist should ask patients about their children, and the role of the oncologist in helping children cope with their parent’s illness.
Please talk about the importance of informing children about a parent’s cancer diagnosis. What is the appropriate age to have the discussion?
What a child understands about the meaning of a cancer diagnosis will vary with the child’s age and past experience with the disease within both the child’s family and community. Regardless of age, a child’s ability to cope is enhanced by open communication between the child and the important adults in her life.
Sharing a parent’s diagnosis and identifying it as cancer is really the first step toward making the disease “talk-about-able” and sends a powerful message to the child that he or she is important enough to be included in the conversations about something that has major impact on the child’s family. Having an open discussion about a parent’s cancer diagnosis lets the child know that the subject is not so scary that no one is able to talk about it together. This reassures the child that she is not going to be left alone with misconceptions or worries and that she can ask questions and expect they will be answered honestly.
Timing of the Discussion
When is the appropriate time for that initial discussion to take place? At diagnosis?
Yes, usually at diagnosis or soon thereafter. Children are attuned to the emotional atmosphere of the home environment and typically quickly pick up that something is wrong, which leads to worry or feeling unsettled. Acknowledging symptoms and the diagnosis early using simple language is best.
That said, parents are the experts when it comes to their children. They are going to make their own decisions about the timing of the discussion as they see fit. I would encourage parents, if they are going to delay sharing information about the diagnosis, to at least plan what they are going to say if their child initiates the conversation by asking a direct question about the parent’s health. Most of us want our children to receive the clear messages that “in our family we are honest with each other, even when the news is bad,” and that “we face challenges together.”
I’ll often talk with parents, particularly those with older children or teens, about the idea of worrying with each other as opposed to worrying about each other. When we worry with each other we face the challenges together and we can problem-solve most effectively. When parents and children worry about each other, often what they are focused on is off the mark, so they have a harder time being effective in addressing each other’s real concerns.
Role of the Oncologist
What is the role of the oncologist in helping children cope with their parent’s illness, especially in the palliative care setting?
Some children, particularly older children, may want the opportunity to talk directly with the palliative care oncologist. But for many oncologists and palliative care specialists, their role is to be very specific with parents about their cancer diagnosis and treatment, so parents can communicate with their own children and plan for their support. Asking a patient questions about family—such as, Do you have children at home? How old are they? Have you told them about your illness? and Is there a specific worry you have about your children?—invites the patient to share unexpressed worries.
It’s also important to ask patients about how their symptoms might be impacting their day-to-day ability to parent effectively. For example, addressing pain is essential. Patients can’t do things with their children if their pain isn’t well managed. Another example is having severe gastrointestinal distress that may make it difficult for parents to attend school functions or take their children to the park.
Attention to these quality-of-life issues is especially important. Unfortunately, an oncologist may not be able to extend the life of a patient with advanced disease, but being able to address some of the symptoms of the cancer or the treatment can make a big difference in the quality of the precious time the patient has to spend with his or her children.
How can oncologists help parents discuss end-of-life choices with their children?
A patient’s role as a parent may play a major role in decision-making about treatment options and end-of-life care, so it is important to tease this out. Sometimes parents will elect to participate in a clinical trial or to continue treatment even when they do not believe that the treatment is going to benefit them, only because they want to be able to say to their child that they did everything possible to get well and they never gave up fighting. The parent may need guidance in how to explain discontinuing treatment as a loving choice.
For example, that discussion could begin like this: “After talking with my medical team and learning about all the different treatment options, I know that none of the treatments would slow down the cancer and give me more time with you. More chemotherapy would most likely just make me feel nauseated and tired and lead to more time spent in the hospital. I want to spend my precious time feeling as good as I can feel and being home, so I can enjoy the time we have together.”
This process of helping a parent talk through end-of-life decisions may come up around the time of discussions about do-not-resuscitate and do-not-intubate orders. Many oncologists are not going to be comfortable guiding parents in how to talk with their 7- or 9-year-old child, and that is why I feel so strongly that a mental health clinician trained in child development should be available to the oncology medical team to facilitate these discussions.
One of the barriers that inhibit conversations with patients about their parenting concerns is an oncologist’s inexperience in dealing with children. Having a medical professional specifically trained in child development on the palliative care team sets the stage for everyone on the team to feel more comfortable entering the zone of talking with patients about their concerns for their children, no matter what the children’s ages. ■
Disclosure: Dr. Rauch reported no potential conflicts of interest.
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is ASCO’s Senior Director of Education, Science and Professional Development Department.
Often, the children of patients with cancer are the invisible sufferers of the disease and its aftermath. These online resources can help patients talk with their children about a cancer diagnosis, treatment, and prognosis, and their potential impact on the children.