Addressing Child Custody Concerns of Parents with Life-Limiting Illness

Abstract

Introduction:

Custody concerns are a major source of psychosocial distress among single parents with life-limiting illness. Although children are increasingly living in diverse household structures, the current health care system is not designed to meet the unique needs of single parents or nontraditional families. Patients with unaddressed custody concerns can experience psychological suffering during treatment and at the end of life. Lack of clarity and resolution regarding guardianship may also result in additional hardship for their grieving children.

Case Description:

We present the case of a 36-year-old-female with metastatic breast cancer, who was the single mother of four children. Despite significant concerns about her children's well-being, the patient did not complete legal guardianship processes. She experienced immense distress at the end of her life due to an unresolved custody plan.

Discussion:

This case demonstrates the need for addressing custody and guardianship concerns with seriously ill patients early in the illness trajectory. While clinicians need not become experts on custody and guardianship themselves, understanding the impact of custody concerns—and the barriers to their resolution—can substantially improve end-of-life care for patients and better equip surviving family for the changes that lie ahead.

Introduction

Despite advances in cancer therapies, many parents with cancer will die from their disease before their children reach adulthood. Parents who lack a natural coparent face particularly challenging dilemmas when their illness is life-limiting. At a time when most individuals prefer to focus on responding to the immediate needs of illness, treatment, and parenting, these patients must contemplate difficult decisions with respect to the future care and custody of their children. Awareness of the challenges and resources available to these patients is increasingly needed among palliative care providers of all training backgrounds due to the changing demographics of American families.

The American family is more diverse than ever before in its history. From 1960 to 2014, the number of children in the United States living with two parents in their first marriage dropped from 73% to 46%.¹ The 2016 U.S. Census Data indicate that over 22 million children live in a household separate from at least one of their biological parents, and approximately three million American children do not live with either of their parents.² Parenthood is also increasing among lesbian/gay/bisexual/transgender/queer individuals, with at least 200,000 U.S. children being raised by a same-sex couple.³ For minor children, the death of a parent can precipitate profound emotional, financial, and practical hardship; many of these children also face additional legal and custodial changes when custody planning is incomplete.^4,5 Thus, the changing landscape of U.S. families has profound implications for the end-of-life planning responsibilities of ill parents.

Single parents with life-limiting illness frequently report concerns about the current and anticipated impact of their illness on their children.^6,7 Clinical research on the custody planning of parents with life-limiting illness is sparse and primarily limited to parents with human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS).^8,9 The limited data available do suggest that many parents, including those with cancer, are inadequately prepared for this aspect of end-of-life care.¹⁰ The contributing factors for this problem are complex and include patient, professional, and systemic barriers. For patients and providers, preparation of future custody often requires ill parents and their providers to acknowledge the life-limiting nature of the patient's illness.¹⁰ Patients, families, and health care providers can also have inadequate knowledge of the requirements, processes, and resources needed to carry out custody plans, which frequently vary across states.¹¹ On an institutional level, within most medical settings, there are few mechanisms in place to facilitate timely and accurate patient education about custody planning for parents with serious illness.^12,13

One of the overarching goals of palliative care is to enhance the quality of life of patients and their families.¹⁴ For single parents with life-limiting illness, addressing their custody concerns is a critical aspect of patient-centered care.¹² Given the knowledge gaps of most medical practitioners with respect to this area, we aim to provide a contextual understanding and initial approach to addressing custody and guardianship concerns for single parents with life-limiting illness.

Case Description

Ms. C was a 36-year-old separated mother of four children, ages 9 through 15 years. Three months before her metastatic breast cancer diagnosis, Ms. C started divorce proceedings with her husband, the children's biological father, who had a substance use disorder. Ms. C had sole physical custody of the children and limited the children's contact with him, although he would episodically request to see them. He did not provide child support, nor did they have a formalized custody arrangement in place.

Ms. C deferred discussions with her health care providers about the life-limiting nature of her illness. She voiced a strong intention to stay alive to raise her children, two of whom had special needs. She had a close relationship with her parents who lived locally and had enough financial resources to afford a family law attorney. Ms. C had grave concerns about her husband's ability to safely care for their children. Yet, she disliked meeting with the attorney and would frequently delay her appointments with him due to feeling physically unwell or emotionally burdened. Ms. C readily acknowledged that both she and her children experienced anxiety when thinking about her husband obtaining custody, but she did not engage in any legal actions to formalize her parents' relationship with her children.

After a year of relative stability and 15 months after her initial metastatic cancer diagnosis, Ms. C's disease rapidly progressed over a period of months. She experienced symptomatic hepatic and pulmonary metastases, secondary infections, and prolonged hospitalizations. While hospitalized in the medical intensive care unit, her oncology team discussed the need to defer disease-directed therapies. Ms. C became increasingly worried about her children's custody plan and voiced intense fear that her husband would obtain even partial custody of them. Unable to travel to her attorney's office, she began filming video testimonials from her hospital bed, attesting that her husband was unfit to be a parent. She was discharged from the hospital to home and died three days later. Following her death, her children moved to her parents' house. The outcome of the custody proceedings is unknown as Ms. C's family declined to maintain contact with her health care providers following her death.

Discussion

As the case demonstrates, the modern U.S. health care system can fail to meet the end-of-life custody concerns and complex needs of single parents with life-limiting illness. Several emotional, physical, legal, and resource barriers challenge the ability of single parents with terminal illness to meet their custody goal: ensuring a safe, stable, loving home for their children. In this discussion, we will first present a brief overview of general custody and guardianship principles followed by enumeration of five potential recommendations in which health care providers can assist these patients.

In general, biological parents have equal rights and responsibilities toward their children. Even when there is a history of inconsistent parental involvement, a living biological parent is assumed to be the parent's natural guardian upon the death of the other parent.¹⁵ For many patients, this reality is particularly painful to both acknowledge and accept. Single parents who seek to nominate someone other than the noncustodial parent (the biological parent who does not have physical custody of the children) as their children's future caregiver will likely face substantial legal challenges if this is not consistent with the noncustodial parent's wishes.¹⁶

In addition, individual states differ with respect to the nature and extent of legal opportunities to nominate guardians for children of ill parents.¹⁷ As of June 2018, ∼29 states and the District of Columbia have provisions for standby guardianship.¹⁸ Standby guardianship laws allow terminally ill parents to legally transfer custody of their children to another individual who will care for their children when they are no longer able to, while still allowing the parent to retain a measure of authority over their children.¹⁸ Standby guardianship procedures specifically address the needs of parents living with a life-limiting illness, who want to ensure a legally secure future for their children.¹⁸ Every state has its own guidelines for how to nominate, establish, and activate a standby guardian, which depend on a variety of factors, including written documentation, a formalized will, the patient's diagnosis, debilitation, incapacity, and death.¹⁸ Health care providers need not become legal experts on this process, but instead identify whether their state allows for standby guardianship, educate their patients about this option, and facilitate connecting parents with legal services or advocates who can assist them with this process. It is unknown what practical or psychological impact of having stand-by guardianship in place might have had for Ms. C since this option was not discussed with her by her health care team.

Recommendations

First, health care providers can initiate custody discussions with single parents early in the disease course (see Table 1). Given the highly emotional nature of the topic, separating these discussions from deterioration in physical functioning or disease progression may facilitate parents' emotional willingness to engage in these discussions—a potential critical barrier to custody planning. Allowing time for parents to actively consider this possibility allows them the opportunity to engage in the legal process, involve their family members in difficult conversations, and initiate or make changes to legal documents if needed. For the patient described in the case above, her one-year period of disease stability was the missed opportunity to develop a formalized custody plan. However, even this amount of time may have been inadequate for a patient like Ms. C. Formalizing custody agreements may take months, with more complex family situations taking years. For parents whose children have physical or intellectual disabilities, the amount of time can be even longer. While health care providers cannot change the complex and uncertain nature of the legal system, they can initiate these conversations with their patients as soon as possible, allowing time for ill parents to engage their families in the process of discussion and decision making, documentation preparation, and court hearings.

Table 1.

Key Domains and Custody Questions for Single Parents with Life-Limiting Illness

To facilitate these conversations, we recommend the clinician to first (1) assess whether his/her state has a standby guardianship law in place, (2) have access to resources or referrals to provide the patient, and (3) have an understanding of the patient's expected disease or symptom trajectory.
Domain	Example questions
Assess concerns about custody	• How much do you worry about who will take care of your child if you are unable to?
Assess concerns about custody	• Do you worry about who your child will live with if it is not with you?
Assess whether child has another biological parent	• Does your child primarily live with you?
	• Is child's other parent in the picture?
	• How involved is he/she in their life?
Assess understanding of legal process/needs	• If something were to unexpectedly happen to you, who do you think would care for your child?
Assess understanding of legal process/needs	• What is your understanding of what happens to children if a single parent suddenly becomes ill or dies?
Selection of a custodian	• Who do you think would care for your child if you could not do so yourself?
	• Have you chosen a guardian for your child?
	• Does this person know?
Assess how much patient has engaged in custody planning conversations	• Have you discussed with your child's other parent about future plans for your child?
	• Have you had a conversation with a friend or family member about future plans for your child?
Preparation of the custodian	• Have you had any conversation with someone close to you about what you want for your child's future?
Preparation of the child	• What does your child know?
	• How involved has your child been in thinking about who might be a good caregiver for them?
	• What does your child most worry about this?
Formalizing custody plans	• Have you spoken with an attorney or lawyer about your wishes for your child?
	• Have you formalized any custody arrangements in a will?
	• Have you legalized your custody plans?
Assess barriers	• What gets in the way, if anything, of making these kinds of plans?
Provide referrals and resources	• Do you know of or use any resource to help you through this process?
	• Do you need recommendations/referrals for legal aid?
	• How can we help make this process less stressful for you?
Validate and encourage parents for any willingness to engage in this process	• You know your child better than anyone and have his/her best interests at heart. I know this is really difficult. I also know you can do it and we are here to support you with this.

Second, health care providers can educate themselves about the basic principles of custody and guardianship planning to facilitate a timely connection between patients and legal resources (see Fig. 1). Out of the 6200 hospitals in the United States, ∼5% have formal medical-legal partnerships to potentially assist with this process, but the current need for these services far outweighs their availability.¹⁹ In the case of Ms. C, access to such specialized legal services within the health care institution did not exist.

FIG. 1.

Custody planning flow chart for clinicians working with parents who have life-limiting illness. This is a general guide regarding custody outcomes and does not show other potential scenarios such as coparents who are incarcerated or families with multiple coparents. A natural parent is the biological parent of a child whom they typically have custody of. Standby guardianship laws allow terminally ill parents to legally transfer custody of their child to another individual who will care for their child when they are no longer able to, while still allowing the parent to retain a measure of authority over their child.¹⁶

For Ms. C, health care providers were deeply sympathetic to her concerns, yet were unsure of how to support her custody-related distress beyond recommendations to seek legal counsel. Awareness of overarching child custody principles may help empower health care providers to more directly address parents' concerns. The consequences of not having custody plans, let alone formalized custody plans, are immense. The lack of any type of legally recognized relationship between informally chosen caregivers and the children places such plans in jeopardy. If a parent dies or becomes incapacitated, there is little or no legal evidence of the parent's wishes if the noncustodial parent is in disagreement. Bereaved children may find themselves under the care of the very adult whom the patient had wished to avoid.¹⁰ The psychological consequences of unaddressed custody concerns are also compelling. For Ms. C, regardless of the outcome of her custody proceedings, she experienced considerable emotional distress at the end of her life related to her children's future caregivers.

Third, health care providers can provide psychoeducation to patients who are single parents about the nature and need to engage with the legal system. Clinicians who understand the unpredictability and severity of the patient's illness may be the only individuals who interact with and have enough of the patient's trust to have these emotionally sensitive conversations. Ill parents often know who they want to care for their children, but do not pursue formal custody plans, believing that because they have voiced these wishes, the legal system will proceed accordingly.^5,20 Educating patients and their families about the realities and time frame for choosing nonparents as guardians can help them achieve their goals for their children and increase the likelihood of a successful custody plan. While having a formal custody plan may not be consistent with a patient's family or community custom, health care providers can still educate patients about the risks of no legal plan. Unsurprisingly, health care providers themselves may delay these conversations due to their own uncertainty or lack of familiarity with the legal system. Yet, like conversations about disease prognosis, these conversations are processes and need time to unfold at a pace that the patient finds acceptable.

Fourth, clinicians can provide patients with accurate information about the disease process. Existing evidence robustly demonstrates that patients with advanced cancer and their clinicians have differential understanding of prognosis.²¹ In the seminal Cancer Care Outcomes Research and Surveillance (CanCORS) study, the majority of patients receiving chemotherapy for presumed incurable stage IV lung or colorectal cancer reported beliefs about the curative potential of chemotherapy.²² Parents with overly optimistic views of their illness, like Ms. C, may not engage in custody planning in ways they might otherwise pursue if they had more accurate understanding of their expected disease trajectory or risk of cooccurring medical events such as infection or thromboembolism. Cultivation of prognostic awareness is a nuanced process that skilled health care providers can facilitate with their patients. This approach is particularly relevant when patients have the opportunity to engage in multiple conversations early in the course of a patient's disease.²³ While discussions of prognosis are critical to high-quality care for all patients,^24,25 managing prognosis effectively and accurately is all the more important when caring for a custodial parent with life-limiting illness.

Fifth, health care providers can name and validate the emotional pain that single parents experience. Asking patients to prepare for a life for their children without them may be the single most psychologically difficult task for parents with life-limiting illness. Even voicing their concerns about custody represents a major step in parents' psychological readiness to consider the impact of their life-limiting illness on their children. These patients may benefit from additional emotional support in these conversations, such as guidance when speaking with their children or family meetings to facilitate the family's ability to engage in these difficult tasks.

This brief case discussion does not allow for a full exploration for the myriad of cultural and social factors that influence custody planning and related barriers in the United States. Families that may be most impacted by custody concerns are also more likely to face broader societal challenges related to race, income, and/or sexual orientation. In addition, the impact of the opioid epidemic on families with minor children may further increase the relevance and complexity of custody concerns for custodial grandparents and other kin with cancer. Given the relative absence of information regarding custody concerns in the palliative care literature, this article can serve as a first step toward a clinical and research agenda.

While the barriers to custody planning for parents with life-limiting illness are particularly challenging, the potential benefits for the family unit are profound. Facilitating custody planning for parents with life-limiting illness could reduce their anxiety and parenting concerns, better prepare the children's future caregivers for their roles, and improve children's outcomes. Palliative care providers have a responsibility toward easing psychological distress of the patients they treat, and addressing custody concerns of single parents is a critical aspect of this process.

Footnotes

Acknowledgments

The authors wish to gratefully acknowledge the patients who inspired the writing of this article study.

Funding Information

This work was supported by Grant 2015213 from the Doris Duke Charitable Foundation and the National Institutes of Health by Grant K07CA218167-02.

Author Disclosure Statement

No competing financial interests exist.

References

Parker

, Horowitz

, Rohal

: Parenting in America: Outlook, worries, aspirations are strongly linked to financial situation. Pew Research

Center

. 2015. www.pewresearch.org (last accessed September 9, 2019).

Grall

: Custodial Mothers and Fathers and Their Child Support: 2013. US Census Bur Curr Popul

Reports

, 2016. https://www.census.gov/content/dam/Census/library/publications/2016/demo/P60–P255.pdf (last accessed September 9, 2019).

Day

: LGBTQ Family Fact Sheet. Fam Equal Counc, 2017.

Black

: Coping with loss. Bereavement in childhood. BMJ, 1998; 316:931–933.

Rotheram-Borus

, Draimin

, Reid

, Murphy

: The impact of illness disclosure and custody plans on adolescents whose parents live with AIDS. AIDS, 1997; 11:1159–1164.

Park

, Check

, Song

, et al.: Parenting while living with advanced cancer: A qualitative study. Palliat Med, 2017; 31:231–238.

Muriel

, Moore

, Baer

, et al.: Measuring psychosocial distress and parenting concerns among adults with cancer: The Parenting Concerns Questionnaire. Cancer, 2012; 118:5671–5678.

Lightfoot

, Rotheram-Borus

: Predictors of child custody plans for children whose parents are living with AIDS in New York City. Soc Work, 2004; 49:461–468.

Wilfert

, Aronson

, Beck

, et al.: Planning for children whose parents are dying of HIV/AIDS. American Academy of Pediatrics. Committee on Pediatric AIDS, 1998–1999. Pediatrics, 1999; 103:509–511.

10.

Willis

, Peck

, Sells

, Rodabaugh

: Custody planning: A retrospective review of oncology patients who were single parents. J Pain Symptom Manage, 2001; 21:380–384.

11.

Retkin

, Antoniadis

, Pepitone

, Duval

: Legal services: A necessary component of patient navigation. Semin Oncol Nurs, 2013; 29:149–155.

12.

Hallarman

, Snow

, Kapoor

, et al.: Blueprint for success: Translating innovations from the field of palliative medicine to the medical-legal partnership. J Leg Med, 2014; 35:179–194.

13.

Shin

, Byrne

, Jones

, et al.: Medical-Legal Partnerships: Addressing the Unmet Legal Needs of Health Center Patients. Washington, DC: Geiger Gibson/RCHN Community Health Foundation, 2010, Research Collaborative policy research brief no.18.

14.

World Health Organization (WHO): Definition of Palliative Care. www.who.int/cancer/palliative/definition/en/# (last accessed August 15, 2019).

15.

Cahn

: Planning Options for the Daily Care of a Minor in the Event of an Adult's Incapacity or Death. 125 Tax Est Plan Minor, 2006; 1–82.

16.

Debele

: Custody and parenting by persons other than biological parents: When non-traditional family law collides with the constitution. N D Law Rev, 2007; 83.

17.

McAllaster

, Suzuki

, Selbin

: Issues in family law for people with HIV. In: AIDS and The Law, 2004; 393:416–418.

18.

U.S. Department of Health and Human Services

: Standby Guardianship (Child Welfare Information Gateway). Washington, DC, 2018.

19.

Department of Health Policy and Management at Milken Institute School of Public Health at George Washington University. FAQs: About Medical-Legal Partnership. National Center for Medical-Legal Partnership. 2019 [cited 2019 May 8]. https://medical-legalpartnership.org/faq (last accessed May 8, 2019).

20.

Rotheram-Borus

, Lester

, Wang

, Shen

: Custody plans among parents living with human immunodeficiency virus infection. Arch Pediatr Adolesc Med, 2004; 158:327–332.

21.

Mackillop

, Stewart

, Ginsburg

, Stewart

: Cancer patients' perceptions of their disease and its treatment. Br J Cancer, 1988; 58:355–358.

22.

Weeks

, Catalano

, Cronin

, et al.: Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med, 2012; 367:1616–1625.

23.

Jackson

, Jacobsen

, Greer

, et al.: The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. J Palliat Med, 2013; 16:894–900.

24.

Smith

, Williams

, Lo

: Discussing overall prognosis with the very elderly. N Engl J Med, 2011; 365:2149–2151.

25.

Weeks

, Cook

, O'Day

, et al.: Relationship between cancer patients' predictions of prognosis and their treatment preferences. J Am Med Assoc, 1998; 279:1709–1714.