Background

For both patients and their family and friend caregivers, a diagnosis of advanced cancer brings myriad psychosocial challenges, including existential distress. Meaning-Centered Psychotherapy (MCP) is designed to address such existential challenges and improve well-being in patients with advanced cancer (Breitbart et al., Reference Breitbart, Pessin and Rosenfeld2018). Drawing on the strong evidence-base for MCP, Meaning-Centered Psychotherapy for Caregivers (MCP-C) was developed to target the related and unique needs of cancer caregivers (Applebaum et al., Reference Applebaum, Roberts and Lynch2022; Reference Applebaum, Baser and Robertsin press). Both 7-session interventions utilize didactics and structured reflection prompts to facilitate discussions around how patients and caregivers might continue to connect to what is meaningful to them, or sources of meaning [i.e., historical, attitudinal, creative, experiential; (Breitbart, Reference Breitbart2017)] despite suffering brought on by cancer. While MCP and MCP-C have been shown to reduce existential distress in patients and caregivers independently, this case offers a compelling example of the potential power of concurrent MCP engagement. Here, we describe the course of MCP-C and MCP for Elliot,Footnote ¹ a caregiver, and Leo, his husband who was diagnosed with Glioblastoma Multiforme (GBM), and how MCP cultivated a shared language around meaning, deepening their connection, and strengthening their ability to cope as Leo faced end of life and Elliot was confronted with bereavement.

MCP-C case description

Elliot was a 32-year-old cisgender Indian American man. From session one, his profound dedication to caregiving and Leo was apparent, yet he struggled with guilt over not being able to give fully to his many roles — caregiver, husband, friend, activist, and manager. Like many caregivers, Elliot felt pressure to be perfect, partly shaped by societal expectations commonly placed on caregivers of selflessness and to embrace caregiving as transformative. This led to a critical discussion: connecting to meaning in the context of caregiving does not necessitate finding meaning in caregiving or in cancer per se. While Elliot identified powerful ways he found meaning in this devastating experience, he expressed relief that MCP-C focused on connecting to meaning outside of caregiving through exploring historical, attitudinal, creative, and experiential sources of meaning.

Most prominent in Elliot's reflections on historical sources of meaning was Leo and the impact of their relationship. Elliot shared that part of the legacy he was given by his family was one of coping with intergenerational trauma by internalizing emotions. Rather than focusing on the painful repercussions of this trauma on his family and community, Elliot was inspired to become an activist and pursued a career dedicated to social justice. Though this approach to coping had served him well, he recognized that Leo had taught him the beauty of living by “just being.” Elliot described how this legacy impacted him: “He [Leo] complemented me and made me more holistic. He taught me to accept love.” To cultivate a new living legacy of emotional vulnerability, Elliot committed to asking Leo to push him to express himself more, especially about his cancer caregiving experience.

Reflecting on attitude as a source of meaning, Elliot described being “decisive,” an approach to navigating challenges that served him well in the past, but which was unhelpful in the context of coping with the uncertainty of when or how Leo might decline. Elliot was fearful that something would prevent his carrying out Leo's wishes, and that Leo's death would not be peaceful. We reflected on the possibility that Elliot might choose an attitude of self-compassion in these moments, which he was able to easily do for others, but not himself. However, since discussing legacy, Elliot had been increasingly choosing to accept emotional care from Leo, which had in turn created shared meaningful moments of connection despite their worries about Leo's death.

Elliot's explorations of creative and experiential sources of meaning were linked through Leo's legacy of appreciating the small moments. Elliot characterized himself as a “doer” and expressed that creating a meaningful life came more naturally to him than embracing experiential meaning. In contrast, Leo taught him how to simply “be,” whether through appreciating the expression of love through a song, seeing adoration in their dog's eyes, or reveling in the beauty of their houseplants. He reflected “The legacy he has left me is filling life up with the color of life.”

As MCP-C concluded, Elliot was invited to consider hopes for the future. He shared being afraid of forgetting Leo after his death, saying “How do you remember all these small moments? The totality of a relationship? I'm scared of forgetting him.” We reflected on how much Leo and his legacy were woven into Elliot's sources of meaning. Eventually, Leo's death would take away his physical presence, but his powerful legacy would remain threaded through Elliot's life.

MCP case description

Leo, a 57-year-old cisgender White man, came to MCP after his tumor recurred, at Elliot's encouragement. Leo shared initial concerns about how GBM made him feel disconnected from himself, because he was no longer able to work and the tumor was causing distressing cognitive changes. Through exploration of his authentic sense of self, Leo articulated those aspects of his identity that remained unchanged, including his sense of humor and his role as a loving husband.

Leo found discussions of each source of meaning beneficial. The discussion of the historical source of meaning centered on the legacy that he would give to others, and most notably Elliot. He initially questioned the extent he could give a legacy to others, since he and Elliot had no children, but then realized that he had — and would continue to have — a profound impact on Elliot. For example, he had helped to cultivate in Elliot an appreciation for the present moment, and he recognized that he was teaching Elliot, and others, about the fragility of life by virtue of living courageously with a brain tumor. The session highlighted the profound and enduring impact of his legacy on everyone in his life.

The discussion of the attitudinal source of meaning highlighted Leo's tendency toward problem-solving, an approach that was not presently helpful. Leo also shared that historically he had found it difficult to be vulnerable and allow others to take care of him, but that now he was choosing to allow Elliot to take care of him, including by taking control of healthcare communication and assisting him with physical acts, like helping him to shower. While Leo was ultimately not in control of his illness, he realized he could choose how to face death. It was important for Leo to share his goals, including his preference for dying at home and without pain. Though they had touched on this topic before, Leo had avoided directly telling Elliot what he wanted for fear of upsetting him, but he recognized this was an opportunity for them to meaningfully connect.

The discussion of the creative source of meaning highlighted Leo's commitment to “leaving nothing undone.” Soon after his diagnosis but before MCP, he thought about unfinished business and happily reflected on his life with no regrets. In discussing courage, he shared the courage it took to open up to Elliot, after Leo had had his heart broken so many times, and to a man so much younger than he. His peers had initially questioned his choice in a partner but having connected to Elliot's maturity, intelligence, and wit, Leo was confident this was the man for him.

The experiential source of meaning resonated very deeply for Leo. He always found great respite and joy in photography; capturing the beauty of life and nature helped him feel calm and connected to the world around him. The discussion of connectedness inspired Leo to reflect on ways he could tie his photography practice into the theme of legacy. For example, he explored the possibility of sending an original photograph to each of his loved ones as both a reminder of him and the importance of connecting to the small things. He also shared the palpable sense of connectedness he felt when sitting in silence with Elliot, a connection that did not require words.

Complementary impacts on meaning

The benefits Elliot and Leo derived from MCP were not limited to themselves or the period in which they engaged in care, as they shared in several additional joint sessions conducted before Leo's death. Practically, there were marked improvements in healthcare communication, including about Leo's wishes around end-of-life care. They also grew in their ability to be vulnerable with each other emotionally, and, in Leo's case, physically. Though they had discussed the challenges of cancer before treatment, MCP/MCP-C provided a shared language to speak about painful topics in a meaningful, richer, and connected manner. They had been fearful of burdening each other with their respective pain yet recognized open communication would allow them to share their suffering and, in fact, create meaningful moments.

After Leo's death, Elliot returned for bereavement support and his use of meaning-centered principles was clear. As he learned to live with grief, Elliot described drawing on sources of meaning, particularly Leo's legacy of appreciating the small moments and Elliot's own newly discovered legacy of pursuing a career in mental health to more directly impact others. He also drew on his activist legacy by speaking about how navigating cancer care highlighted the importance of their marriage given the legal and social implications and privileges that come with marriage. Importantly, as with caregiving, the sources of meaning did not resolve Elliot's grief but sustained him through connection to Leo and facilitated his creating a life of meaning in Leo's physical absence.

This couple's experience with MCP/MCP-C has clinical implications for the utility of concurrent MCP engagement of patients and caregivers. Independently, completion of MCP/MCP-C provided Leo and Elliot with space to explore meaning and express their unique cancer-related challenges. However, joint sessions following MCP/MCP-C revealed how they drew on the principles to maintain and enhance their sense of meaning together. MCP/MCP-C served as grounding experiences that helped Leo and Elliot recognize the life of meaning they had created together, how they could draw on meaning to guide them in making increasingly difficult decisions, and how their shared and unique sense of meaning would uphold them through the end of Leo's life and accompany Elliot in bereavement. To help as many patients and caregivers experience similar benefits, future research should be done to investigate the impact of concurrent engagement on intervention efficacy on patient end-of-life and caregiver bereavement outcomes.