Fahad Saeed1,2,3, Hugh Adams4, Ronald M Epstein5,6. 1. Department of Medicine, Division of Nephrology, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA, fahadsaeed20@gmail.com. 2. Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA, fahadsaeed20@gmail.com. 3. Department of Public Health, University of Rochester, Rochester, New York, USA, fahadsaeed20@gmail.com. 4. Department of Medicine, Division of Nephrology, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA. 5. Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA. 6. Department of Psychiatry and Family Medicine and Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA.
Abstract
BACKGROUND: Although many older patients with end-stage renal disease and limited prognoses prefer conservative management (CM), it is not widely offered in the United States. Moreover, there is a dearth of US-based literature reporting clinical experience with shared decision making regarding CM of advanced chronic kidney disease (CKD). METHODS: We describe the clinical experience of 13 patients who opted for CM at the University of Rochester Medical Center's CKD clinic during 2016-2017. Main outcomes include: (1) reason for choosing CM, (2) completion of advance directives, (3) location of death, and (4) utilization of hospice service. Patients' reasons for choosing CM were categorized into 4 broad categories based on a review of their electronic medical records. A retrospective chart review conducted by 2 reviewers determined the status of advance care planning, hospice referral, and place of death. RESULTS: The mean age of these patients was 81.8 years (SD 7.3). Their reasons for choosing CM included: poor prognoses; a wish to maintain their quality of life; their desire for a dignified life closure; and the intention to protect family members from having to see them suffer, based on their own memory of having witnessed a relative on dialysis previously. A total of 8 patients died: all received hospice services, 6 died at home, one at a nursing home, and one at a hospital. Advance care planning was completed in 100% of the cases. Symptoms were managed in collaboration with primary care physicians. CONCLUSION: Patients' decisions to choose CM were influenced by their values and previous experience with dialysis, in addition to comorbidities and limited prognoses. Promoting the choice of CM in the United States will require training of clinicians in primary palliative care competencies, including communication and decision-making skills, as well as basic symptom management proficiencies.
BACKGROUND: Although many older patients with end-stage renal disease and limited prognoses prefer conservative management (CM), it is not widely offered in the United States. Moreover, there is a dearth of US-based literature reporting clinical experience with shared decision making regarding CM of advanced chronic kidney disease (CKD). METHODS: We describe the clinical experience of 13 patients who opted for CM at the University of Rochester Medical Center's CKD clinic during 2016-2017. Main outcomes include: (1) reason for choosing CM, (2) completion of advance directives, (3) location of death, and (4) utilization of hospice service. Patients' reasons for choosing CM were categorized into 4 broad categories based on a review of their electronic medical records. A retrospective chart review conducted by 2 reviewers determined the status of advance care planning, hospice referral, and place of death. RESULTS: The mean age of these patients was 81.8 years (SD 7.3). Their reasons for choosing CM included: poor prognoses; a wish to maintain their quality of life; their desire for a dignified life closure; and the intention to protect family members from having to see them suffer, based on their own memory of having witnessed a relative on dialysis previously. A total of 8 patients died: all received hospice services, 6 died at home, one at a nursing home, and one at a hospital. Advance care planning was completed in 100% of the cases. Symptoms were managed in collaboration with primary care physicians. CONCLUSION:Patients' decisions to choose CM were influenced by their values and previous experience with dialysis, in addition to comorbidities and limited prognoses. Promoting the choice of CM in the United States will require training of clinicians in primary palliative care competencies, including communication and decision-making skills, as well as basic symptom management proficiencies.
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