“I feel like I'm being recognized as being a part of his treatment”: Caregiver perspectives of the serious illness care program for older patients with hematologic malignancies

Abstract Introduction Patients with hematologic malignancies (HMs) often have unpredictable illness trajectories and higher end-of-life healthcare utilization than those with solid tumors. Older adults with HMs face additional risks due to aging-related conditions, underscoring the importance of timely conversations about their values and care preferences. However, serious illness conversations (SICs) frequently occur late in the disease course. The Serious Illness Care Program (SICP) is a structured communication intervention that supports clinicians in conducting SICs to elicit patient values and promote goal-concordant care. We previously adapted the SICP for older adults with HMs, integrated with a geriatric assessment, and piloted it in two settings: outpatient telehealth and inpatient in-person encounters. Caregiver involvement is essential for providing informational, emotional, and decisional support to patients, yet little is known about their experiences with SICP. We sought to explore caregiver perceptions of these guided SICs in the context of hematologic malignancy. Methods In two single-arm pilot studies, we recruited caregivers and conducted semi-structured qualitative interviews following SICs with older adults with HMs as part of the Serious Illness Care Program (SICP). In the outpatient telehealth study, SICs were led by the primary oncologist or advanced practice providers (APPs), while in the inpatient study, they were conducted by a hematology/oncology fellow or APP. Two coders independently analyzed the interviews via an inductive, conventional content analysis approach to identify key themes. Findings There were 23 caregivers included in total, with 6 from the outpatient telehealth study and 17 from inpatient. The mean age was 62 years (range 34 – 77), 70% were female (n = 16), and 100% were White (n = 23). We identified three overarching themes: (1) the SICP enhanced the caregiver experience, (2) context and timing of the SICP were important, and (3) the SICP evoked varying emotional responses among caregivers. Caregivers generally felt that the SICP had value and enhanced their experience through a variety of mechanisms. Many expressed that it encouraged early, meaningful conversations centered on the patient's values and about topics which may not otherwise have been discussed. Caregivers felt empowered and like important members of the team, and that they had greater knowledge of the patient's wishes. Many also felt a strengthened sense of trust and connection with their care team.The context and timing of the SICP were important. Caregivers often shared that for themselves, it was preferable for the initial conversation to occur early in the disease course, but that it must be tailored to match the patient's readiness and state of mind. The setting did not appear to have a large impact; participants in both the inpatient and outpatient interventions appreciated the convenience. It was generally important to them that the individual conducting the SICP had familiarity and rapport with the patient, particularly if they were not part of their outpatient care team.Emotional responses to the SICP varied among caregivers. Many acknowledged the weight of the topics discussed and of witnessing the patient's vulnerability, but did not feel this detracted from the experience. A small minority felt that the questions did not fully encourage positive thinking which contradicted their personal coping methods. Several agreed with the importance of assessing information preferences of the patient and caregiver at the beginning of the conversation in order to modulate potential emotional triggers and tailor the language used for questions. Conclusion Caregivers of older patients with HMs generally perceived the SICP to be valuable and to enhance their experiences, with a preference for conversations to occur early in the disease course, and expressed a range of emotional responses to the SICP. Future iterations of the SICP should continue to include caregivers and make efforts to tailor the conversation according to the readiness and information preferences of the patient and caregiver, as well as to the health of older adults.