BackgroundQuality of life (QOL) is an important consideration for people living with advancing chronic conditions. Palliative care providers speak about how, despite physical decline in late life, many patients report growth and meaning in other domains. This mixed methods study uses QOL survey responses to explore domain trajectories and interview data to explore how patients with advancing chronic conditions experience distinct QOL domains.MethodsThe study sample includes 156 now-deceased participants who completed the FACIT-Pal quarterly, and 40 (10 now-deceased) participants who discussed QOL in an interview. Mean subscale scores were plotted over participants’ last 18 months to reveal QOL trajectories. Interview data were analyzed to reveal how participants’ experience, actions and cognitive processes influenced QOL scores.ResultsPhysical and functional subscale ratings show gradual decline. Emotional QOL maintains with a small dip 2–3 months before death, and social QOL ratings improve in participants’ final 3 months. Participants create and strengthen relationships that help them better manage health and receive instrumental and emotional support; seek activities in which they can find joy, meaning, and purpose; and support cognitions through which patients accept and communicate about illness, and emphasize positives.ConclusionQOL domains exist in different trajectories. Despite physical and functional decline, participant ratings of emotional QOL maintain and ratings of social QOL improve at end of life. Understanding the processes through which participants countered declining QOL may help providers identify how to best support and promote improved QOL for patients during their final months.

Background:Patients with serious chronic illness are at a greater risk of depersonalized, overmedicalized care as they move into later life. Existing intervention research on person-focused care for persons in this transitional period is limited.Objective:To test the effects of LifeCourse, a team-based, whole-person intervention emphasizing listening to and knowing patients, on patient experience at 6 months.Design:This is a quasi-experimental study with patients allocated to LifeCourse and comparison groups based on 2 geographic locations. Robust change-score regression models adjusted for baseline differences and confounding.Setting/Participants:Patients (113 intervention, 99 comparison in analyses) were individuals with heart failure or other serious chronic illness, cancer, or dementia who had visits to hospitals at a large multipractice health system in the United States Midwest.Measurements:Primary outcome was 6-month change in patient experience measured via a novel, validated 21-item patient experience tool developed specifically for this intervention. Covariates included demographics, comorbidity score, and primary diagnosis.Results:At 6 months, LifeCourse was associated with a moderate improvement in overall patient experience versus usual care. Individual domain subscales for care team, communication, and patient goals were not individually significant but trended positively in the direction of effect.Conclusion:Person-focused, team-based interventions can improve patient experience with care at a stage fraught with overmedicalization and many care needs. Improvement in patient experience in LifeCourse represents the sum effect of small improvements across different domains/aspects of care such as relationships with and work by the care team.

IntroductionFamily and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One’s Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support. Created in partnership with caregivers and clinicians, MYLOH items reflect the essential dimensions of caregiving and can be used to tailor caregiver coaching to domains of greatest need. In this study, we extend MYLOH's initial focus on dementia care to caregivers of patients with other chronic life-limiting illnesses.MethodsMYLOH was completed by primary caregivers (n = 190) of people with a range of advanced chronic illnesses enrolled in the LifeCourse study, an innovative, whole-person approach to health management. Item relevance and responses were compared by group across MYLOH items and domains using z-tests for equality of proportions.ResultsAll MYLOH items were relevant to caregiving for all types of chronic illness; only 13% of caregivers answered “not my responsibility” to any question. MYLOH identified caregiving struggles across patient diagnosis groups with a few, disease-specific ‘hotspots’. Overall, 64% of caregivers scored low in activation on at least one healthcare management task, especially getting enough help with caregiving, managing everyday caregiving tasks, understanding/managing medications, and knowing how to respond to rapid changes in care recipients' health status. No difficulty was unique to a specific type of care recipient illness.ConclusionsMYLOH has potential as a tool for identifying caregiver coaching and support needs in managing a range of serious chronic illnesses. Caregiving difficulties endorsed by over 20% of caregivers should be core components of chronic illness management programs regardless of disease focus, with disease-specific tailoring as required. MYLOH may be useful in evaluating caregiver interventions and health systems’ performance in integrating caregivers into the care management of patients with complex life-limiting illness.

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Quality of life (QOL) for patients with serious illness in late life is important for patients and policy makers and has implications for improved care delivery. This mixed-methods evaluation examined the effectiveness of a new whole-person approach to late life care-the LifeCourse-which provides patients with ongoing, across-setting assistance from lay health care workers, supported by a clinical team. We investigated whether participation in LifeCourse improves QOL for intervention patients, compared with usual care controls. QOL was assessed using baseline and 6 months Functional Assessment of Chronic Illness Therapy-Palliative version tool ( n = 181 patients and 126 controls). LifeCourse had a significant positive effect on overall QOL for patients when compared with controls. Interview data revealed that participants adjusted expectations when assessing QOL and actively sought out ways to maintain QOL with meaningful activities and needed services. LifeCourse offers a promising model for improving QOL for late life patients.