Whole-person care is a new paradigm for serious illness, but few programs have been robustly studied. We sought to test the effect of LifeCourse (LC), a person-centered program for patients living with serious illness, on health-care utilization, care experience, and quality of life, employing a quasi-experimental design with a Usual Care (UC) comparison group. The study was conducted 2012 to 2017 at an upper-Midwest not-for-profit health-care system with outcomes measured every 3 months until the end of life. Enrolled patients (N = 903) were estimated to be within 3 years of end of life and diagnosed with 1+ serious illness. Exclusion criteria included hospice enrollment at time of screening or active dying. Community health workers (CHWs) delivered standardized monthly 1-hour home visits based on palliative care guidelines and motivational interviewing to promote patients’ physical, psychosocial, and financial well-being. Primary outcomes included health-care utilization and patient- and caregiver-experience and quality of life. Patients were elderly (LC 74, UC 78 years) and primarily non-Hispanic, white, living at home with cardiovascular disease as the primary diagnosis (LC 69%, UC 57%). A higher proportion of LC patients completed advance directives (N = 173, 38%) than UC patients (N = 66, 15%; P < .001). LifeCourse patients who died spent more days in hospice (88 ± 191 days) compared to UC patients (44 ± 71 days; P = .018). LifeCourse patients reported greater improvements than UC in communication as part of the care experience ( P = .016). Implementation of person-centered programs delivered by CHWs is feasible; inexpensive upstream expansion of palliative care models can yield benefits for patients and caregivers. Trial Registration: Trial NCT01746446 was registered on November 27, 2012 at ClinicalTrials.gov .
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.
Background We aimed to determine the efficacy of a recently developed decision support intervention, PlanWell™, which was designed to improve the quality of Goals of Care Determinations (GCD) in primary care settings. Methods We conducted a multicenter randomized trial of patients considered by the primary care doctor to require establishment or review of GCD. Enrolled patients were randomized to receive the study intervention by a trained facilitator or usual care. Outcomes included preferences for life-sustaining treatments, a modified decisional conflict score (DCS), and the proportion of patients who with completed GCD form 8-12 weeks post intervention. Physician ratings of DCS and amount of time spent with patient obtaining GCD were also compared. Preliminary results 123 were consented and randomized, 115 completed the trial. Of enrolled patients, 52% were male and the average age was 74 years. Post intervention, fewer intervention patients preferred CPR and ICU care (15% vs. 30%, p=0.25). Patients in the intervention group were better informed (p=0.03) and feeling more support from the physician (p=0.03). The completion rate of GCD forms was similar in both groups (96.7% intervention vs. 94.0% usual care, p=0.71). Physicians considered intervention patients to be better informed (p=0.07) and to have a clear sense of their values (p=0.04) and spent less time with them (9.7 vs 13.0 mins, p<0.001) compared to usual care patients. Conclusions The PlanWell™ intervention seems to help clarify values, better inform patients and may reduce preference for resuscitation, while reducing the physician's time to accomplish GCD decisions.
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