On April 26th, 2023 the Parenting with Clinic opened in the N.C. Basnight Cancer Hospital. This clinic is led by UNC Lineberger’s Justin Yopp, PhD and Cindy Rogers, JD, and serves patients who have minor children. The clinic’s mission is to assist parents in supporting and communicating with their children about cancer and to guide them through the legal matters that come along with their illness.
For more insight into the clinic, we interviewed Justin Yopp and Cindy Rogers. (The responses were jointly prepared by Yopp and Rogers).
Can you give us some background on the Parenting with Cancer Clinic and how the idea came to light?
The Parenting with Cancer Clinic is for every patient at UNC who is being treated for cancer and has children 17 years of age or younger. Parents with cancer face unique challenges when it comes to promoting the coping and well-being of their children now and in the future. Broadly, our aim is to offer support and guidance as they navigate their families through a really challenging time.
In the clinic, we meet with parents at any point along their illness continuum, beginning at diagnosis. The idea for the clinic actually started late last year after we were each asked to meet with a young mother who was hospitalized on the ICU. This patient was nearing the end of her life and wanted guidance on how to share this with her children and what legal steps she could take to secure their future. It’s not unusual for one or both of us to be consulted to see patients in this situation who are seeking help with emotional and practical matters. A common request is preparation of a testamentary will and documents relating to the guardianship of children, which is something this mother wanted done. Unfortunately, her health deteriorated rapidly. Despite every effort to engage a lawyer to prepare legal documents, she lost consciousness before they could be signed. While she was able to have some conversations with her children before she died, these were minimal and not all that they could have been.
This experience made clear how hurried conversations and legal documents prepared in haste at the bedside are far from ideal. It also motivated us to create the Parenting with Cancer clinic so we could better meet the needs of these families. We do want to re-emphasize here that the clinic is for all parents with cancer, and not just ones who may have especially challenging prognoses.
What are the main goals of the clinic and what are you hoping its impact will be?
The clinic offers a dedicated time and space for thoughtful and meaningful conversations with parents to address two broad aims: 1) to provide tools to communicate with their children about their illness and treatment, and to offer guidance to assist in navigating their family through a challenging time, and 2) discuss with parents the potential importance of preparing documents that plan for the care of their family now and in the future, and to connect them with community resources as appropriate.
Our patients have all the same complicated family relationships as anyone, only with the added stress of cancer that can create urgency to get family relationships and legal affairs in order. Families come in all different shapes and sizes, and their needs vary greatly. In the Parenting with Cancer Clinic, we help families begin thinking about their unique needs and goals, assist in evaluating which services will help them meet those goals, and to begin this process early in a patient’s cancer experience so they can make careful and thoughtful decisions.
Looking forward, what are some things you see in the future for the clinic?
A broad aim of our work is to normalize difficult discussions for parents and appreciate the planning for the unwanted does not mean giving up hope for a good outcome. Getting your affairs and being hopeful about your prognosis are not mutually exclusive. These two things seem to be in opposition to each other, but they are not. Planning for possible outcomes does not mean giving up hope. It’s a gift to your family and something that everyone should consider doing regardless of health status. In fact, we believe that parents will have some peace of mind knowing that their families will be taken care of, which will free them up to focus on their treatment and living their lives.
In the future, we will develop a research agenda to expand on the research we have already conducted and allow us to better understand – and thus better serve – parents with cancer.
What are you both looking forward to the most with the opening of the Clinic?
We’re looking forward to having a designated time and space to engage parents in thoughtful and meaningful conversations about ways to care for their children now and in the future.
What are some of the legal aspects that the clinic will help patients with and why are they important to address?
At the NC Basnight Cancer Center, we help patients prepare three important documents that are part of an estate planning package. Advance Care Planning includes Health Care Powers of Attorney and Advance Directives (Living Wills) which allow naming of a health care decision maker and expressing wishes for medical treatment near the end of life. Through our Medical-Legal Partnership with Legal Aid of North Carolina and UNC Law School, we offer preparation of General Powers of Attorney which allow naming a person to act on your behalf to manage your personal, and business matters.
An important missing piece in our current services, is preparation of a will and documents that plan for the future care of minor children. The Parenting with Cancer Clinic will provide an opportunity to discuss the importance of future planning and offer a referral portal for helping families find legal representation for issues of estate planning and care of minor children. We are partnering with the legal community to identify legal resources across the state that can serve as a referral source. For patients with financial means to retain a private attorney, we’ll help them begin the process of thinking about their goals and encouraging them to seek legal services. For our families with a financial barrier to finding and retaining legal services, we are working with the North Carolina legal community to offer low and pro bono estate planning services.
Where is the Clinic located? Hours of Operation?
The clinic is located in the Mary Ann Long Patient and Family Resource Center in the NC Basnight Cancer Hospital. The clinic operates on Wednesdays afternoons, and we see patients for either in-person or virtually. Providers can refer by entering a “Parenting with Cancer” order in EPIC or by contacting either one of us directly.
You can find more information about the Mary Ann Long Patient and Family Resource Center here
Thank you, Justin and Cindy for the amazing work you are doing to support the Parenting with Cancer community!