Carmen H M Houben1, Martijn A Spruit2, Jos M G A Schols3, Emiel F M Wouters4, Daisy J A Janssen5. 1. Department of Research and Education, CIRO, Horn, The Netherlands. Electronic address: carmenhouben@ciro-horn.nl. 2. Department of Research and Education, CIRO, Horn, The Netherlands; Department of Respiratory Medicine, Maastricht University Medical Centre, NUTRIM School of Nutrition and Translational Research in Metabolism, Maastricht, The Netherlands. 3. Department of Family Medicine and Department of Health Services Research, Faculty of Health, Medicine and Life Sciences/CAPHRI, Maastricht University, Maastricht, The Netherlands. 4. Department of Research and Education, CIRO, Horn, The Netherlands; Department of Respiratory Medicine, Maastricht UMC+, Maastricht, The Netherlands. 5. Department of Research and Education, CIRO, Horn, The Netherlands; Centre of Expertise for Palliative Care, Maastricht UMC+, Maastricht, The Netherlands.
Abstract
BACKGROUND: For optimal end-of-life decision-making, it is important to understand the stability of patients' treatment preferences. The aim of this paper is to examine the stability of willingness to accept life-sustaining treatments during 1-year follow-up in Dutch patients with advanced chronic organ failure. In addition, we want to explore the association between willingness to accept high-burden treatment and preferences for CPR and mechanical ventilation (MV). METHODS: In this multicenter longitudinal study, 265 clinically stable outpatients with advanced COPD (Global Initiative for Chronic Obstructive Lung Disease stage III/IV [n = 105]), chronic heart failure (New York Heart Association class III/IV [n = 80]), or chronic renal failure (requiring dialysis [n = 80) were visited at baseline and at 4, 8, and 12 months to assess the stability of life-sustaining treatment preferences using the Willingness to Accept Life-sustaining Treatment instrument. RESULTS: Two hundred six patients completed 1-year follow-up (mean age, 67.2 years [SD, 13.1 years]; 64.1% men). Overall, proportions of patients who were willing to accept life-sustaining treatment during 1 year did not change over time. However, individual trajectories showed that about two-thirds of patients changed their preferences at least once during a year. Moreover, there was no association found between the stability of willingness to undergo high-burden therapy and the stability of preferences for CPR and MV. CONCLUSIONS: The current findings show the complexity of preferences for end-of-life care and indicate once again that advance care planning is a continuous process between patients and physicians, in which preferences for specific situations are discussed and that needs to be regularly reevaluated to deliver high-quality end-of-life care. CLINICAL TRIAL REGISTRATION: Netherlands National Trial Register (NTR 1552).
BACKGROUND: For optimal end-of-life decision-making, it is important to understand the stability of patients' treatment preferences. The aim of this paper is to examine the stability of willingness to accept life-sustaining treatments during 1-year follow-up in Dutch patients with advanced chronic organ failure. In addition, we want to explore the association between willingness to accept high-burden treatment and preferences for CPR and mechanical ventilation (MV). METHODS: In this multicenter longitudinal study, 265 clinically stable outpatients with advanced COPD (Global Initiative for Chronic Obstructive Lung Disease stage III/IV [n = 105]), chronic heart failure (New York Heart Association class III/IV [n = 80]), or chronic renal failure (requiring dialysis [n = 80) were visited at baseline and at 4, 8, and 12 months to assess the stability of life-sustaining treatment preferences using the Willingness to Accept Life-sustaining Treatment instrument. RESULTS: Two hundred six patients completed 1-year follow-up (mean age, 67.2 years [SD, 13.1 years]; 64.1% men). Overall, proportions of patients who were willing to accept life-sustaining treatment during 1 year did not change over time. However, individual trajectories showed that about two-thirds of patients changed their preferences at least once during a year. Moreover, there was no association found between the stability of willingness to undergo high-burden therapy and the stability of preferences for CPR and MV. CONCLUSIONS: The current findings show the complexity of preferences for end-of-life care and indicate once again that advance care planning is a continuous process between patients and physicians, in which preferences for specific situations are discussed and that needs to be regularly reevaluated to deliver high-quality end-of-life care. CLINICAL TRIAL REGISTRATION: Netherlands National Trial Register (NTR 1552).
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