1. Getting Started with Palliative Care
Carri Siedlik, APRN
Nebraska Medicine

2. Importance of Palliative care in ESRD and CKD
Nearly 20 percent of dialysis patients stop dialysis prior to death and increasingly older patients are choosing not to begin dialysis
As a group, physicians are poorly trained in palliative care and often feel uncomfortable with the care of dying patients
In one study for example, 40 percent of 260 nephrologists stated they were very well prepared to make end-of-life decisions
Davison, et all. Clinical Journal American Society of Nephrology 2006.

3. Begin at time of diagnosis
Providing palliative care to patient’s with CKD begins at the time of diagnosis
Continues throughout the patient’s life
As disease progresses palliative care assumes increasing importance
Integral to “good deaths”
Dialysis unit staff

4. Principles of Palliative Care
Assessment of quality of life
Advance care planning
Pain and symptom management
Psychological, spiritual and social support for the patient and family and community (dialysis and transplant community)
Bereavement support

5. Hospice Referral One aspect of palliative care
Appropriate for those expected to live less than six months if disease follows usual course
Must be willing to relinquish curative treatments
Continuing dialysis vs withdraw dialysis
Case-by-case basis
Nearly all cases of those who withdraw from dialysis should be eligible
Still underutilized in ESRD

6. Quality-of-life assessment in CKD
Most common themes are:
Depression
Sexual dysfunction
Reduced functional status
Low rates of employment
Periodic assessment

7. Advance Directives Patient and family directed
Can be done with lay person (chaplain, social work, dialysis staff)
Underutilized by patients with CKD
Patients and families rarely discuss stopping dialysis as part of advance care planning
Physician orders for life sustaining treatment-POLST
Actual order by physician
Created in effort to ensure that patient wishes for end-of-life care are followed

8. Prognosis Those who are deciding whether or not to begin dialysis
Patients who are contemplating stopping dialysis
Those with superimposed acute illnesses
Team needs to provide guidance regarding prognosis to allow patient-centered decision making
Charlson comorbidity score
Functional status
Surprise question “Would I be surprised if this patient died within the next year?”
Patients report relying on dialysis unit staff to address palliative care needs. However, less than 10 percent report discussing end-of-life issues with their nephrologist

9. After dialysis discontinuation
Mean survival is six to eight days with a range of 2 to 100 days
Most patients who withdraw from dialysis die in the hospital and are rarely referred for hospice care

10. End-of-life symptoms in ESRD
Pain
Weakness
Agitation
Depression
Myoclonus
Dyspnea
Constipation
Hypervolemia
Nausea
Delirium

11. Promoting palliative care
Screen patients with the surprise question at dialysis initiation and at hospital admissions
Make it a part of QIP. Documentation of advance care planning or surrogate decision maker in EMR
Enhance palliative care content and competencies in nephrology fellowship
Emphasize palliative care training for dialysis nurses, social works and pharmacists
Measure changes in symptom assessments over time
Discuss goals of care and document
POLST

12. Palliative care resources
Center to Advance Palliative Care (CAPC)
Online curriculum on advance care planning, prognosis, goals of care discussions and symptom management. Free for all NM and UNMC employees
ASN Geriatric Nephrology Curriculum online.org/education/distancelearning/curricula/geriatrics/
ASN Improving Dialyisis Rounds for Geriatric Patients
RPA Clinical Practice Guidelines on Shared Decision-Making in Dialysis & Toolkit
Coalition for Supportive Care of Kidney Patients

13. References
UpToDate. Palliative care: End-stage renal disease. Holley, J. Literature review current through: Jun 2019.