Closing the Gap on the Palliative Care Needs of Patients with Kidney Disease: Innovations from the Pathways Project (TH306)
Among seriously ill patients, those with advanced chronic kidney disease (CKD) and end-stage kidney disease (ESKD) arguably receive among the worst end-of-life care. These patients frequently die in the hospital, often after an intensive procedure like cardiopulmonary resuscitation, and with a low referral rate to hospice. There is now a concerted effort in the nephrology and palliative care communities to integrate palliative care into the treatment of these seriously ill patients. The Pathways Project is a national demonstration, funded by the Gordon and Betty Moore Foundation, to develop scalable innovations in kidney supportive care.
Conclusions and RelevanceAlthough a high proportion of patients received elements of palliative care, transitions to a goal of comfort or hospice happened very near death. Palliative care delivery can be improved by systematizing existing mechanisms, including prompts for earlier goals-of-care discussion, symptom screening, and spiritual care, and by building collaboration between primary and specialty palliative care services.
As multiple different studies and surveys continue to illustrate, palliative and hospice medicine has failed to have an appropriate impact on the quality of life for the end-stage renal disease (ESRD) population. People with Chronic Kidney Disease (CKD) remain less likely to die at home, spend more time in the hospital and at higher costs in the last 3 months of life. (Kerr M et al, NDT, 2016).
The current care of patients with advanced chronic kidney disease (CKD) and end stage renal disease (ESRD) in the U.S. is not patient-centered, nor does it utilize palliative care approaches to optimize patients ’ quality of life. In several recent studies, patients with ESRD compared to patients with other chronic diseases have received the most intensive treatments at the end of life including cardiopulmonary resuscitation, intensive care unit admission, mechanical ventilation, and feeding tube insertio n.
As chronic kidney disease progresses to end-stage renal disease (ESRD), important discussions regarding when and if to initiate dialysis occur. ESRD affects more than 660,000 Americans, less than 10,000 (1.5%) of those are pediatric patients whose time on dialysis is typically meant as a bridge to transplant. In rare circumstances, comorbidities, such as multiorgan failure, progression of other life-threating medical conditions, congenital anomalies, and size restrictions limit pediatric candidates ’ access to transplant.
Systematic identification of seriously-ill patients allows palliative care researchers and clinicians to test new models of care delivery. Algorithms based on clinical indicators —including natural language processing—can aid in such identification.
Patients with End Stage Chronic Kidney Disease (ESCKD) seen as renal outpatients often have high palliative care needs. In 2016, we collaborated with renal medicine to refer ESCKD patients with a physician-estimated prognosis of 3 months to the palliative medicine clinic (PMC). The aim of our study was to assess the symptom burden, prognosis (time from first visit to PMC to the time of death), rate of completion of Advance Care Planning (ACP) and readmission rates of patients referred under this new collaboration.
Chronic kidney disease (CKD) is increasingly common in the aging population, and the highest incidence of patients starting dialysis is those 75 years of age and older. Patients over the age of 67 face mortality rates as high as 23% at 6 months, though there exists great variability. Older patients with advanced CKD are more likely to have comorbidities including cognitive and functional limitations. Symptom burden is high and does not consistently improve, and may worsen, after starting dialysis.
Palliative care services are increasingly involved in the care of patients with chronic kidney disease, either alone or as a comorbid condition. Because renal impairment often changes the pharmacokinetic and/or pharmacodynamic effects of a drug, this presents a challenge for prescribers.
A diagnosis of advanced chronic kidney disease (CKD), or end stage renal disease (ESRD) represents a significant life change for patients and families. Individuals often experience high symptom burden, decreased quality of life, increased health care utilization, and end-of-life care discordant with their preferences. Early integration of palliative care with standard nephrology practice in the outpatient setting has the potential to improve quality of life through provision of expert symptom management, emotional support, and facilitation of advance care planning that honors the individual ’s values and goals.
Despite advances in pre-dialysis care and dialysis technology, patients with advanced chronic kidney disease and end-stage renal disease continue to experience multiple comorbidities, a high symptom burden, a shortened life expectancy and substantial physical, emotional, and spiritual suffering. Patients with acute kidney injury and end-stage renal disease, especially if they are older, often undergo prolonged hospitalizations, greater use of intensive medical treatment, and limited survival. Unfortunately, most nephrologists are not trained to conduct shared decision-making conversations to elicit patients ’ values,...