Elise C Carey1, Ann M Dose2, Katherine M Humeniuk3, Yichen C Kuan3, Ashley D Hicks3,4, Abigale L Ottenberg3, Jon C Tilburt1,5, Barbara Koenig6,7. 1. 1 Division of General Internal Medicine, Mayo Clinic, Rochester, MN, USA. 2. 2 Department of Nursing, Mayo Clinic, Rochester, MN, USA. 3. 3 Biomedical Ethics Research, Mayo Clinic, Rochester, MN, USA. 4. 4 Social Behavioral Education Research Institutional Review Board, Tufts University, Boston, MA, USA. 5. 5 Division of Health Care Policy and Research, Mayo Clinic, Rochester, MN, USA. 6. 6 Department of Social Behavioral Sciences, Institute for Health and Aging, University of California, San Francisco, CA, USA. 7. 7 Department of Anthropology, History, and Social Medicine, University of California, San Francisco, CA, USA.
Abstract
BACKGROUND: The quality of perimortem care received by patients who died at our hospitals was unknown. OBJECTIVE: To describe the quality of hospital care experienced in the last week of life, as perceived by decedents' families. DESIGN: Telephone survey that included established measures and investigator-developed content. SETTING: Large, tertiary care center known for high-quality, cost-effective care. PARTICIPANTS: Family members of 104 patients who died in-hospital (10% of annual deaths) over the course of 1 year. INTERVENTION: None. MEASUREMENTS: Participant perceptions of the decedent's care, including symptom management, personal care, communication, and care coordination. RESULTS: Decedents were mostly male (64%), white (96%), married (73%), and Christian (91%). Most survey participants were spouses of the decedent (68%); they were predominately white (98%), female (70%), and Christian (90%) and had a median age of 70 years (range, 35-91 years). Overall satisfaction was high. Pain, dyspnea, and anxiety or sadness were highly prevalent among decedents (73%, 73%, and 55%, respectively) but largely well managed. Most participants believed that decedents were treated respectfully and kindly by staff (87%) and that sufficient help was available to assist with medications and dressing changes (97%). Opportunities for improvement included management of decedents' anxiety or sadness (29%) and personal care (25%), emotional support of the family (57%), communication regarding decedents' illness (29%), and receiving contradictory or confusing information (33%). CONCLUSION: Despite high satisfaction with care overall, we identified important unmet needs. Addressing these gaps will improve the care of dying patients.
BACKGROUND: The quality of perimortem care received by patients who died at our hospitals was unknown. OBJECTIVE: To describe the quality of hospital care experienced in the last week of life, as perceived by decedents' families. DESIGN: Telephone survey that included established measures and investigator-developed content. SETTING: Large, tertiary care center known for high-quality, cost-effective care. PARTICIPANTS: Family members of 104 patients who died in-hospital (10% of annual deaths) over the course of 1 year. INTERVENTION: None. MEASUREMENTS: Participant perceptions of the decedent's care, including symptom management, personal care, communication, and care coordination. RESULTS: Decedents were mostly male (64%), white (96%), married (73%), and Christian (91%). Most survey participants were spouses of the decedent (68%); they were predominately white (98%), female (70%), and Christian (90%) and had a median age of 70 years (range, 35-91 years). Overall satisfaction was high. Pain, dyspnea, and anxiety or sadness were highly prevalent among decedents (73%, 73%, and 55%, respectively) but largely well managed. Most participants believed that decedents were treated respectfully and kindly by staff (87%) and that sufficient help was available to assist with medications and dressing changes (97%). Opportunities for improvement included management of decedents' anxiety or sadness (29%) and personal care (25%), emotional support of the family (57%), communication regarding decedents' illness (29%), and receiving contradictory or confusing information (33%). CONCLUSION: Despite high satisfaction with care overall, we identified important unmet needs. Addressing these gaps will improve the care of dying patients.
Entities:
Keywords:
death; decedent; family caregivers; hospitals; quality of health care; terminal care
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