As I entered the family consult room, all eyes turned to me. My husband and his family were heartbroken, discussing end-of-life care options with my father-in-law’s physician in the intensive care unit. “She’s a physician; she will know what to do,” said my husband’s sibling. Stunned by the unexpected comment, I exchanged a glance with my husband. Once again, my family turned to me as the “medical expert” to guide our decisions—a role I was not comfortable embracing in this setting.
Though I make quick clinical decisions daily as a pediatrician, I was unprepared for the responsibility my family placed upon me. This moment felt profoundly different than the innumerable challenging decision-making scenarios I had faced in the clinical environment. My medical training was not a proxy for navigating family and patient wishes and goals for end of life. In this moment, I felt the remarkable weight of a decision that would deeply impact my own family.
Overwhelmed with guilt but aware of my limitations, I declined to make the decision about my father-in-law’s end-of-life care for my family, engaging others in the family for collaborative decision making. My father-in-law passed away 2 weeks later, and in that short span, we, new parents to a 7-month-old, found ourselves unexpected caregivers for my husband’s 76-year-old mother, a role we have continued in for 8 years.
Through navigating end-of-life decisions for my father-in-law and the subsequent ownership of intensive care needs for my mother-in-law, I have realized how truly unprepared we are, even as physicians, to care for our caregivers. This responsibility is one of the hardest we may face in our lives, and yet it is nearly invisible; it is rarely discussed, and most of us taking on this role experience little guidance.
Through a recent invitation to share my experience as a caregiver and a pediatric hospitalist, I met 4 pediatric hospitalists who shared similar experiences. We hailed from different backgrounds and cultures and experienced varied roles, navigating care for family members experiencing both physical and cognitive disability. Some experienced the challenges of expected leadership among many family members, while others traveled this path nearly alone. Despite these differences, the group universally experienced feelings of unpreparedness and, in discussing our stories, recognized shared themes that relate to the relationship between our professional identities and our caregiving journeys. Drawing from our experiences, the authors hope to share our learnings as a method to ease the journeys of others who find themselves on the journey of caring for caregivers.
Key Insights and Advice for Pediatric Colleagues
Physician Training Is Not Caregiver Training
Our physician roles position us as leaders in many scenarios. Family members and friends may assume that medical training has offered us the preparation needed to coordinate care and make challenging decisions for our loved one. This may also be the perception of physicians involved in the care of our family members, who may sometimes communicate as though discussing a mutual patient rather than a loved one.
Early in the course of her mother’s illness, one of our authors shared that a specialist on her mom’s team asserted that it was “her job to manage all her mom’s care as the physician in the family.” This approach was jarring; in this scenario, the assumptions around responsibility, which seemed to disregard the emotional aspects of the author’s role as a daughter, led to compartmentalization of emotions in order to effectively coordinate care.
Perceptions of responsibility set forth by others may be reinforced within ourselves. Our innate sense of caregiving often drives a feeling of ownership, which may make it challenging to step back from leadership. We encourage those facing these scenarios to remind others that while you are a physician, you are also a family member. “Owning” care decisions may feel appropriate to some individuals in some scenarios, but this is not universal and should not be assumed. Speaking up early may ease challenges in this area as care needs intensify. Be explicit that your medical degree does not obviate input from others in the family or reduce your own need for support.
Adults Are Not Just Big Children
Pediatric training and practice provide insight into the complex interactions between patients and families and emphasize the critical nature of holistic care. Three of this article’s authors’ careers have focused exclusively on children; we were overwhelmed by new challenges and complexities observed in adult care that had not been encountered in pediatrics. Varying levels of care provided by long-term facilities, the interaction between Medicare and Medicaid, and nuances surrounding revocation of autonomy in the setting of cognitive and physical decline are all examples of these intricacies. Some authors gained insight from conversations with adult physician colleagues; others identified the critical nature of support services, such as Social Work and Care Management. Seeking such assistance can be challenging—there is sometimes an impression that we should not “need” this help or that others may be more deserving of this support. We would reemphasize that our medical training is not intended to prepare us as caregivers and fully encourage such supports.
Start Planning Early
In addition to the complex nature of health care needs, the responsibilities of caregiving delve into a number of other domains. You may find yourself involved in decisions around housing, financial, and insurance matters or other legal issues, the breadth of which can be complex and overwhelming. While it may feel uncomfortable to begin discussions on these topics with loved ones outside of acute illness, early conversations can be tremendously helpful as a family member’s capacity for independent care wanes. The New York Times recently published an article about hosting a “death dinner” with your family as a vehicle for discussing end-of-life wishes.1 While this terminology may not suit the personality of all families, we would encourage considering how to best approach these topics in advance of health decline.
Documentation of wishes, including preferred health care proxy, living arrangements, and end-of-life wishes, and sharing with all involved family members may prevent disagreements as circumstances become more challenging and ensure that wishes are met. Discussion relevant to health care should be communicated with medical providers and documented in medical records. Ideally, advanced directives can be executed from input with all involved parties. Discussion should also involve role delineation; in making these decisions, we would advise consideration of both background and capacity of all involved parties proactively to both share the load and ease the burden.
Steps can be taken early to remove barriers for those managing individual aspects of care. For example, caregivers assisting with financial management can be given access to available accounts (checking, saving, investment) so that there is no gap in access to resources. One of our authors was added to her mom’s trust, bank accounts, and credit cards early in her illness; as her mother’s health declined, she could seamlessly assume management of her finances and bills. Another author took steps to become familiar with acceptance of Medicare and Medicaid at local assisted living and memory care facilities, which ultimately impacted facility choices as her father’s care needs escalated. Proactive conversations in another author’s family elucidated a strong family and cultural preference to provide in-home care through end of life. Acknowledging preferences and realities early may help to avoid feelings of later guilt as difficult decisions are made.
Don’t Go It Alone
If you’ve read this far, you have likely begun to absorb our mantra that caring for a caregiver is best accomplished as a team. While putting our heads down and “powering through” a slew of competing priorities may work for a week of service, it is not a sustainable approach for ongoing caregiving responsibilities. Family members and others may assume you are equipped for this type of intensive multitasking based on observations of your professional life. Relative “success” in caregiving, including completion of necessary tasks while maintaining other life responsibilities, may further these perceptions. As such, help may not readily be offered, even when others may be in a position to provide it.
The stress associated with caregiving may be a new kind for some. For many, it is chronic; the types of needs this process brings—coordinating and driving to medical appointments, managing medications and finances, unexpected urgent care visits and hospitalizations, and coordination of the plethora of other tasks on this very long list—may last months or years. Additionally, these needs often do not have a planned “space” among the other aspects of our lives. For some, these needs may occur at times that are busy with career development and other family needs. The result is often a very precarious balance as we attempt to juggle all of this. This is compounded by the knowledge that, at any moment, an emergency or unexpected phone call can place this balance in jeopardy, upending the delicate balance and requiring emergency planning.
We encourage you to seek help in this process. In addition to delineating roles among available family members, it may be important to clearly outline what responsibility is held in each of those roles and to speak up to your network when you are reaching a limit in your capacity or facing a task that may benefit from the skills or support of others (and to encourage others to do the same). Regularly scheduled meetings with other family members may be important; akin to family meetings for hospitalized patients, such communication touchpoints may help you to think ahead around potential challenges and ensure you are planning for challenges and decisions as best as possible as a group.
We would also encourage seeking resources beyond family and friends. Asking medical care teams about embedded and community resources associated with your loved one’s condition early on can help to establish a broader network of support. Employee benefits departments may also be able to offer resources, both for your family member and yourself. One of the author’s employers specifically provided access to elder care experts and respite care information. Community and social media groups for caregivers may also offer valuable expertise on both diagnosis-specific topics and the overall approach to managing complex caregiving needs.
Prioritize Self-Care
Caregivers are known to neglect their own needs and health. While this may feel necessary given the many demands of caregiving, the results are profound and can include outcomes such as depression, anxiety, chronic medical conditions, and a shortened life expectancy.2 Many assume that there will be time to process and heal when your caregiving role comes to an end, yet failing to find time and space to do this throughout the process may jeopardize your own ability to care for your loved one and your mental health.
Accepting the help described above is an important first step in self-care. We would also suggest identifying at least one regular task or activity that you know contributes to your own wellness and committing to maintain this as part of your schedule. This may take some adaptation; one author, who typically derives feelings of wellness from long runs, found these difficult to sustain during peak caregiving responsibilities but was surprised to learn the immense value of slower, shorter walks, which could be accomplished more readily between tasks and on days when she was physically drained. Your own health care can also fall through the cracks when focusing on caregiving; aim to maintain your preventive and active health care needs, including those focused on mental health. Establishing care with a therapist, ideally even before caregiving needs intensify, may also be a key step.
You may reach a point in your caregiving journey wherein other aspects of your life need to be adjusted in order to focus on your loved one. In these circumstances, we would encourage you to have open conversation with those in the impacted areas (family members, employers, and others) to discuss options. Many physicians are hesitant to adapt schedules for these types of life events, citing concerns for letting down colleagues or preventing career advancement. However, such adaptations, including considering use of family medical leave or a modified schedule, may facilitate self-preservation and allow optimization of time with loved ones.
Make the Invisible Visible
While caregiving responsibilities can be all consuming for those finding themselves in these roles, the impact of this work is often not seen by colleagues and friends. Caregiving is a difficult and emotional journey. Witnessing the gradual decline of loved ones amidst our own journey of maturation can be emotionally taxing, demand unwavering strength, and feel unspeakably lonely. The caregiving responsibility is thrust upon us at varying stages of life. While loneliness in this journey is expected at any time, those taking on this responsibility at a young age may feel particularly isolated. They may be in intensive stages of parenting young children, at key stages in career development, or simply observing peers celebrating milestones with caregivers while watching their own decline. It may be the case that colleagues and friends are not aware of this aspect of your life, and even if they are, they may be unfamiliar with the weight of this experience. Related feelings of isolation may worsen existing feelings of sadness or depression. The authors of this piece were surprised to identify the number of shared emotions we found through our experiences and have continued to speak with colleagues who have also shared in these challenges. While there is no easy way to mediate the emotions associated with this process, we would advocate for open communication with those outside of your immediate family circles. This is sometimes prohibited by trying to maintain privacy for your loved one or by a desire to ensure that it appears “everything is okay” in our lives and avoid concerns that caregiving responsibilities may interfere with our professional success. We would advocate for open communications around these challenges outside of your immediate family network. It may be the case that others can empathize with your experience, provide guidance, and even offer support you did not know might be available.
Conclusion
Every caregiving experience is unique, blending beautiful memories with various challenges. As many of us learn to balance these challenges, our hope is that our experiences may offer some strategies and support to others living this experience. We have found connecting with each other and sharing our stories to be a valuable activity. While we as physicians are fortunate to have access to unique resources to address caregiving needs, we also experience unique challenges related to our professional identity; we would encourage ongoing conversations around this topic and others like it within our field.
Drs Shaikh, House, Hodo, Rosenbluth, and Kim conceptualized the paper, drafted and revised the initial manuscript, and approved the final manuscript as submitted.
CONFLICT OF INTEREST DISCLOSURES: The authors have no conflicts of interest relevant to this article to disclose.
FUNDING: No funding has been declared for this article.
COMPANION PAPER: A companion to this article can be found online at www.hosppeds.org/cgi/doi/10.1542/hpeds.2024-008219.
Acknowledgments
Thank you to Dr Patrick Brady for inviting us to share our stories and allowing us to make the invisible visible.
Editor’s note: This piece begins in the voice of Dr Shaikh and then is the collaborative work of all 5 authors.
Comments