Insight Into Advance Care Planning for Patients on Dialysis

• Published in: Journal of pain and symptom management Vol. 45; no. 1; pp. 104 - 113
• Main Authors: Janssen, Daisy J.A., MD, PhD, Spruit, Martijn A., PhD, Schols, Jos M.G.A., MD, PhD, van der Sande, Frank M., MD, PhD, Frenken, Leon A., MD, PhD, Wouters, Emiel F.M., MD, PhD
• Format: Journal Article
• Language: English
• Published: New York, NY Elsevier Inc 2013; Elsevier
• Subjects: Advance Care Planning; Advance Directives; Aged; Aged, 80 and over; Anesthesia & Perioperative Care; Biological and medical sciences; Care management; Chronic renal failure; Communication; Cross-Sectional Studies; Dialysis; end-stage renal disease; Facilitators; Female; Humans; Life sustaining treatment; life-sustaining treatment preferences; Male; Medical sciences; Middle Aged; Nephrology. Urinary tract diseases; Nephropathies. Renovascular diseases. Renal failure; Pain Medicine; Palliative care; Patient Satisfaction; Pharmacology. Drug treatments; Physician-Patient Relations; Quality of care; Renal failure; Surveys and Questionnaires; Terminal Care; Chronic renal failure; advance directives; end-stage renal disease; communication; advance care planning; life-sustaining treatment preferences; Kidney disease; Human; Urinary system disease; End of life decision; Care; Treatment; Preference; Renal failure; Dialysis; Planning; Communication
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2012.01.010

Abstract Context Advance care planning is not included in regular clinical care for patients on dialysis. Insight into life-sustaining treatment preferences and communication about end-of-life care is necessary to develop interventions to improve advance care planning for patients on dialysis. Objectives This cross-sectional observational study aimed to understand the preferences for life-sustaining treatments of outpatients on dialysis and to study the quality of patient-physician communication about end-of-life care and barriers and facilitators to this communication. Methods The following outcomes were assessed in 80 clinically stable dialysis patients: demographics, clinical characteristics, life-sustaining treatment preferences (cardiopulmonary resuscitation and mechanical ventilation, and Willingness to Accept Life-Sustaining Treatment instrument), preference for site of death, quality of communication (Quality of Communication Questionnaire), and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire). Results Patients were able to indicate their preferences for life-sustaining treatments and site of death. Preferences for life-sustaining treatments depend on the specific treatment, the expected outcome of treatment, and likelihood of an adverse outcome. Life-sustaining preferences were discussed with the nephrologist by 30.3% of the patients. Quality of the patient-physician communication about end-of-life care was rated poor. This study identified several barriers and facilitators to end-of-life care communication. Conclusion Patients should receive information about treatment burden, expected outcome, and the likelihood of an adverse outcome when discussing life-sustaining treatments. Quality of patient-physician communication about end-of-life care needs to improve. Barriers and facilitators to communication about end-of-life care provide direction for future interventions to facilitate advance care planning for patients on dialysis.