Integrating palliative care for patients with chronic kidney disease
Brown, 2013Gelfand, 2020Musso, 2015
[NB1] [NB2] [NB3]
Collaborate with, and define the roles and responsibilities of, clinicians, services, families and carers. Consider whether or when to refer to a specialist palliative care service—see Who provides palliative care? [NB4].
Educate the patient and their carer(s) about the prognosis, if appropriate—see Overview of communicating with and supporting patients with palliative care needs.
Discuss patient’s preferences, values and goals of care initially and continue to review.
Support early and ongoing advance care planning, including discussion of resuscitation, hospitalisation and suitability of dialysis.
Identify and support emotional and psychosocial needs.
Anticipate and plan for transitions across various settings, and acknowledge patient and family preferences—see Where is palliative care provided?.
Create and maintain an individualised disease management plan to address current health problems and those expected to arise:
- Manage symptoms and complications, including creating a symptom management plan.
- Plan an approach to modify or stop treatments as the illness progresses (see Decisions about withdrawing or withholding treatment in palliative care), including drugs and dialysis (if relevant).
Support the family and principal carer.
Support patients and their families and carers experiencing loss, grief and bereavement.
Prepare for the last days of life.
NB1: It is often appropriate to introduce palliative care from the time it is recognised that a patient has progressive, life-limiting illness; palliative care can be continued alongside disease-orientated management.
NB2: Aspects of palliative care may need to be introduced or revisited depending on patient and carer needs, and the clinical context. The approach and priorities of care often change with the phase of the illness.
NB3: Caring for patients with palliative care needs can be personally and professionally demanding—for further information and advice on building resilience and avoiding burnout, see Healthcare professional wellbeing in palliative care.
NB4: Kidney supportive care often involves a multidisciplinary team (including the patient’s renal and primary care team) working across settings.
For people with advancing chronic kidney disease, irrespective of whether they are receiving renal replacement therapy, early integration of palliative care (kidney supportive care) is increasingly an international standardGelfand, 2020 because this can:
- optimise quality of life
- improve patient awareness of prognosis
- increase advance care planning
- reduce symptom burden and hospitalisations.
For general benefits of introducing palliative care early, and considerations to inform the approach, see Introducing a patient to palliative care.
Prognostication of chronic kidney disease is uncertain and often unpredictable. Stage 4 (estimated glomerular filtration rate [eGFR] of 15 to 29 mL/minute) or stage 5 (eGFR below 15 mL/minute) kidney disease is an indicator of poor prognosis, particularly when combined with multimorbidity, advanced age, frailty or sarcopeniaMusso, 2015. Patients who cannot start or choose not to have dialysis have varied trajectories of weeks to years, depending on the stage and cause of disease, comorbidities, and medical management maintaining kidney function. The median survival after stopping dialysis is 7 days with 70% of patients dying within 10 days. Patients with anuria, particularly those who have received dialysis for a long time, will have a shorter prognosis; start focusing on care for the last days of life. Patients with residual kidney function may live for weeks after stopping dialysisCohen, 2000Fissell, 2005O'Connor, 2013.