Many families of seriously ill patients experience severe caregiving and financial burdens. Families of younger, poorer, and more functionally dependent patients are most likely to report loss of most or all of the family's savings.
The majority of adults with outpatient visits to a large urban health care system did not use the patient portal, and initiation of use was lower for racial and ethnic minorities, persons of lower socioeconomic status, and those without neighborhood broadband internet access. These results suggest the emergence of a digital divide in patient portal use. Given the scale of investment in patient portals and other internet-dependent health information technologies, efforts are urgently needed to address this growing inequality.
OBJECTIVE:To examine factors associated with family satisfaction with end-of-life care in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). DESIGN: A prospective cohort study with patients randomized to either usual care or an intervention that included clinical nurse specialists to assist in symptom control and facilitation of communication and decision-making. SETTING: Five teaching hospitals in the United States PARTICIPANTS: Family members and other surrogate respondents for 767 seriously ill hospitalized adults who died. MEASUREMENTS: Eight questionnaire items regarding satisfaction with the patient's medical care expressed as two scores, one measuring satisfaction with patient comfort and the other measuring satisfaction with communication and decision-making. RESULTS:Sixteen percent of respondents reported dissatisfaction with patient comfort and 30% reported dissatisfaction with communication and decision-making. Factors found to be significantly associated with satisfaction with communication and decision-making were hospital site, whether death occurred during the index hospitalization (adjusted odds ratio (AOR) 2.2, 95% CI, 1.3-3.9), and for patients who died following discharge, whether the patient received the SUPPORT intervention (AOR 2.0,1.2-3.2). For satisfaction with comfort, male surrogates reported less sat-. isfaction (0.6, 0.4-1.0), surrogates who reported patients' preferences were followed moderately to not at all had less satisfaction (0.2, 0.1-0.4), and surrogates who reported the patient's illness had greater effect on family finances had less satisfaction (0.4, 0.2-0.8). CONCLUSIONS: Satisfaction scores suggest the need for improvement in end-of-life care, especially in communication and decision making. Further research is needed to understand how factors affect satisfaction with end-of-life care. An intervention like that used in SUPPORT may help family members. J Am Geriatr SOC 48:S61-S69,2000.
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