End Stage Renal Disease (ESRD) patients, especially those on hemodialysis, are known to experience high burdens of pain & symptoms that are under-diagnosed and when known, under-treated. The annual mortality rate ranges between 15 to 25%; approximately 25% die as an outcome of dialysis withdrawal; approximately 50% lack decision making capacity at the time the decision to withdraw dialysis is made and yet, despite this, renal patients tend not to have engaged in advance care planning discussions with their family or care providers. The vision of the Renal End-of-Life (REOL) Initiative is to develop and integrate a systematic and compassionate program of supportive care that: 1. improves patients’ pain and symptom burden by using an adapted Edmonton Symptom Assessment System (ESAS) questionnaire, with the development of pain/symptom follow-up protocols and the formation of Pain and Symptom Rounds; 2. discuss and understand patients’ wishes for future care should they not be able to speak for themselves; 3. ensure bereavement follow-up for the patients’ survivors; 4. and incorporates knowledge and awareness of the principles of palliative care into chronic disease management as called for by the June 2010 Senate Report on Palliative Care in Canada. Palliative care education was provided to key Nephrology and clinical staff, an implementation framework developed, an advisory working group formed and a project coordinator hired to help implement the initiative with the goal of incorporating and embedding procedures into practice. The percentage of patients engaging in ESAS is evaluated each time the questionnaire is administered and an advance care planning audit takes place yearly. Results show a decrease at 1 year in the level of symptom burden across all symptoms with statistically significant reductions in tiredness, drowsiness and depression. Severity of symptoms also decreased across 10 of the 11 symptoms. An audit of advance care planning on the unit at one year revealed more than 40% of clients having engaged in advance care planning conversations. An evaluation of the palliative immersion training for the nursing staff on the Renal in-patient unit showed a shift in the understating of palliative care by a new awareness in the priority of pain and symptom management, by identifying palliative care as not just care occurring in the final days/weeks of life but starting much earlier and focusing on quality of life improvement and by an increased comfort and confidence in having challenging conversations with patients/families facing a terminal illness.
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