Ms. T is a 31-year-old female with metastatic cervical cancer and a survivor of domestic violence. Her ex-husband is incarcerated on domestic violence charges. They have three young children. Ms. T has completed multiple lines of cancer therapy in the hopes of extending her life for her children. Despite this, her cancer has progressed, and she is dying. She has a medical power of attorney and advance directive but is estranged from her relatives, except for a trusted cousin who is watching over her children during her hospitalization.
While an advance directive is important, there are other important aspects to be addressed. Health care systems often fail to address custody concerns at the end of life for single parents with terminal illness.1 Clinicians often focus on what may happen in the hospital and rarely on issues beyond the hospital. Single parents with terminal illness frequently have minor children to care for, and this adds layers of complexity to end-of-life care planning.
Parental rights are assumed regardless of a parent’s involvement. When one parent dies, it is usually assumed that the living biologic parent will assume guardianship of any biologic children.1 This may be undesired or potentially distressing to single parents with terminal illness or their children. Laws vary depending on the state the patient lives in, and legal avenues can take months or years to resolve.
During terminal illness, a single parent may be unable to care for their children. Some states allow for “standby” guardianship to transfer legal custody of a minor to a trusted person selected by the parent while retaining some authority for the parent.1 For instance, Ms. T worries about her children being picked up from school and who will authorize permission slips on her behalf. Every state has its own guidelines and processes for these scenarios, so clinicians should be aware of whether their state allows for these provisions. It is important for patients to know that simply voicing who they want to care for their children is not adequate. This can add to the burden of moral distress for a parent with terminal illness.1
It is imperative for clinicians to be able to educate patients on the availability of these processes and be able to direct them to appropriate resources. A proactive approach can offer opportunities to ask thoughtful questions and assess understanding and readiness in an emotionally sensitive manner. Ideally, conversations are initiated early on in illness trajectory, which may help avoid a direct link to physical decline. This can help to reduce distress and crisis when a patient nears the end of life.
There are many other considerations for supporting the children of patients with terminal illness. These include providing age-appropriate communication support and specialized psychological and bereavement support.2,3 While clinicians may not be experts in all of these areas, by addressing them and being aware of available community resources, we can enhance the support and care of our patients living with terminal illness and their families.
References
1. Nelson CA, Stanton KE, Bowers SM, Park EM. Addressing child custody concerns of parents with life-limiting illness. J Palliat Med. 2020;23(8):1134-1138. doi:10.1089/jpm.2019.0293
2. Grabiak BR, Bender CM, Puskar KR. The impact of parental cancer on the adolescent: an analysis of the literature. Psychooncology. 2007;16(2):127-137. doi:10.1002/pon.1083
3. Kallander EK, Weimand B, Ruud T, Becker S, Van Roy B, Hanssen-Bauer K. Outcomes for children who care for a parent with a severe illness or substance abuse. Child & Youth Services. 2018;39(4):228-249. doi:10.1080/0145935X.2018.1491302
