Talking about End Stage Renal Disease (ESRD) at the NHPCO Conference
Hello from Denver, Colorado, the National Hospice Palliative Care Organization Conference, and the pre-conference seminar titled
“Hospice and Palliative Care for Dialysis Patients: Past Successes and Remaining Challenges”
Seminar sponsored by Mid-Atlantic Renal Coalition and the National End of Life Coalition.
Presenters included nephrologists from the UK, Canada and the US, as well as nurses and social workers from the US. Attendees represented the interprofessional team, and equally represented hospice palliative care and the renal/dialysis communities.
It was intriguing to hear about the evolution of thinking and practice within the renal community, the research that has and is being done to further develop knowledge and direct best practice, and the collaboration between the hospice palliative care and the renal communities.
Topics addressed at ESRD Pre-conference
- The burden of symptoms experienced by patients with end stage renal disease (ESRD)
- Pain and symptom management, specifically some guidelines for use of medications
- Dialysis is life prolonging not curative
- Decision to withdraw from dialysis does not always occur prior to death. When it does, it is often because burden is greater than the benefit, dialysis is unable to keep blood levels within the norms, and decreases in function
- Discussions about end of life issues are often difficult and usually do not happen
- Patients want to have end of life discussions
- Significant discussion about the need to address the issue of prognosis, severity of illness, and decisions to stop dialysis BEFORE starting dialysis. How this discussion can best occur, etc. (Reminded me of the discussion about needing to discuss end of life issues with patients at time of diagnosis with dementia related illnesses and definitely before being admitted to a facility.)
- Research to help identify those patients who will benefit from dialysis and those who will not benefit from dialysis.
- Discussion of “conservative” management of patients over 75-80 years of age. Conservative management outlined excellent hospice palliative care (similar to addressing the 8 domains of care/common issues highlighted in the CHPCA Model to Guide HPC) with emphasis by the nephrology team on disease management.
- Discussion as to who is best to provide this care, is it the renal community who are already involved and have developed deep relationships, or is it the HPC community.
It was exciting to see collaboration and cross pollination between the two communities! Both communities will benefit from the expertise of the other! In the coming years we will see more research and from that develop clear guidelines for use in this population.
My hope: I will incorporate this information when I care for patients with end stage kidney disease, and consider this as I plan ongoing education.
My favorite resource: GREAT WEBSITE: https://www.kidneyeol.org/
A cool experience: meeting Alex Harper (nurse) and her interprofessional team from St Paul’s hospital in Vancouver BC who are starting a renal palliative care program!!!! Way to go!
A joyful moment: watching Dr. Alvin Moss, aka “WOODY” address the group. This gentleman has such a contagious love and enthusiasm for his field, and greets the topic with the enthusiasm of a kid who has just discovered a chocolate factory!
Tomorrow the NHPCO conference starts.