For most terminally ill patients, the preferred place of death is home. Previous literature has demonstrated the feasibility of at-home terminal extubation performed by critical care and hospice physicians. This case report describes a terminal extubation performed by a paramedic under the direct supervision of an Emergency Medical Services physician in the patient's home. Guided by a comprehensive plan and logistical support from a team of hospice providers, a successful out-of-hospital terminal extubation is possible. To truly achieve patient-centered care at end of life, the choice for an out-of-hospital death is necessary.
The number of people with End Stage Renal Disease (ESRD) who need dialysis treatment has increased sharply among adults age 75+. Older adults on dialysis have lower rates of advance care planning and higher treatment intensity, hospitalization and intensive care than people other chronic illnesses. Comprehensive care of older adults with ESRD includes advance care planning that addresses goals of care and not just specific medical treatments. The purpose of this study was to explore the nature of symptom burden and advance care planning in dialysis patients. The study design was exploratory, descriptive and cross-sectional. Quantitative and qualitative data were collected during in-person chairside interviews with people having dialysis treatments. Categorical questions focused on demographics and advance directives. The Dialysis Symptom Inventory was used to measure symptom burden. Open-ended questions addressed the trajectory of illness and goals of care. Thirty-five interviews were conducted. Participants’ Mage=55.8 years (range 27-84); 51 % were >60. A distinctive pattern of difference by age emerged. Participants >60 demonstrated greater multimorbidity and lower symptom burden (MDSI=30.13; Range 11-63) compared with those <60 (MDSI=36.31; Range 3-78). Goals of care also varied with age. Older adults’ goals were: (1) Functional (e.g. to walk better, drive); and (2) Existential (e.g. maintaining, surviving, enjoying). Goals of participants <60 were: (1) Transplantation; and (2) Engagement (e.g. work, school, travel). The results suggest that the illness experience and goals are influenced by age and multimorbidity. Implications: ESRD-specific advance care planning conversations with a focus on goals of care are important.
End Stage Renal Disease (ESRD) conveys high symptom burden, multimorbidity and the greater likelihood of hospital death than other serious illnesses. Increases in people with ESRD occurred most sharply among adults age 75+. Despite high mortality risk, few with ESRD consider end-of-life preferences or discuss with a physician. The purpose of this study was to explore the nature of advance care planning in ESRD. The study utilized mixed methods and both qualitative and quantitative data was collected during in-depth chairside interviews with 31 people while they were on hemodialysis. Participants ranged in age from 29-85; Mage=60; (N=13 [40%/)60). The data was divided above and below the Mage, and distinct differences were found in the nature of advanced care planning by age group. Greater numbers of people >60 (N=11[61%]) were not considering a transplant while (N=9[69%]) of those under 60 had a failed transplant and were again on the waiting list. Although the majority of participants had a health care proxy (N=27[87%]), more who were >60 had a proxy who knew their wishes (N=14[78%]) compared with (N=9[69%]) who were 60 compared with none <60. The qualitative data illuminated these age-differentiated responses in themes: Older age and (1) Multimorbidity; (2) Frequency/intensity of hospitalization; (3) Diminished hope of transplantation; and (4) More acute death awareness. The need for disease-specific advance care planning—with hopes and expectations about transplant--and attention to the influence of age and decline cannot be overstated.
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