Overview of palliative care and role in nephrology care
1. What is palliative care?
Palliative care is specialized care that treats the symptoms and burdens associated with serious illness. Palliative care is delivered by an interdisciplinary team that includes physicians, nurses, social workers, and chaplains.
Palliative care is not synonymous with hospice care (see later).
2. What are the domains of palliative care?
Palliative care collaboratively addresses multiple domains for patients with serious illness. These domains include:
treatment of distressing physical and psychological symptoms
help outline goals and preferences for treatment decision making and end of life
support spiritual needs and beliefs
address caregiver needs
3. How does palliative care differ from hospice?
Palliative care is appropriate at any stage of serious illness. Hospice care is a Medicare benefit provided to patients with terminal illness or when prognosis is likely less than 6 months and the goals of care have shifted toward symptom management rather than life-prolonging therapies. The broad domains of palliative care are still used, but the structure of care is focused on symptom relief and bereavement needs as patients’ approach end of life.
A helpful schematic ( Fig. 80.1 ) shows the gradual shift from curative to palliative care and eventual hospice care over the illness course.
4. What age group of the chronic kidney disease (CKD) population has the highest rates of dialysis initiation?
Based on data from the US Renal Data Service (USRDS), adults older than 75 years have the highest rates for dialysis initiation. This subset of patients presents an important challenge to nephrologists due to their limited prognosis, high symptom burden, and increased need for palliative care.
5. How can palliative care be helpful in nephrology practice?
Nephrologists care for a medically complex population who are at risk for having untreated symptoms, medical setbacks, and limited survival. Palliative care domains that specifically address nephrology needs fall into three domains:
Shared decision making
Advance care planning
6. What is the prevalence of symptoms in end stage kidney disease (ESKD)?
Studies from patients with ESKD have shown that physical symptoms such as pain, fatigue, and pruritus are present in a majority of hemodialysis patients. The severity of symptom burden correlated with decreased health-related quality of life. Dialysis patients are at increased risk for depressive symptoms, with a prevalence of approximately 20%.
7. Is there a substantial difference in the symptoms reported by patients with CKD versus those who have started dialysis?
The prevalence of patient-reported symptoms, quality of life, and presence of depression are not substantially different between patients with CKD and those who have started dialysis.
8. What are the most common symptoms reported by patients with advanced CKD or ESKD?
Fatigue, worrying, pruritus, dry skin, dry mouth, feelings of sadness, sleep disturbances, irritability, loss of libido, and muscle cramps were reported by at least 40% of patients in either the CKD or ESKD group in a study of 177 patients.
From the same study, at least 20% of patients in either the CKD or ESKD group reported having pain or soreness, shortness of breath, anxiety, constipation, edema, restless legs, diarrhea, anorexia, headache, cough, nausea, lightheadedness or dizziness, and lower extremity paresthesias.
9. How aware are nephrologists of symptoms reported by patients?
Symptom management is a top priority for patients. Despite this, these symptoms are not commonly identified or known by their treating nephrologists. Based on a study of dialysis patients and their providers, at least 25% of providers answered “Don’t know” for the 10 most commonly reported symptoms by patients. Current evidence suggests that nephrology providers’ unawareness of symptoms is one of the main barriers to improving quality of life for patients with renal disease.
10. What screening tools are available to help nephrologists uncover symptoms?
Four commonly used tools are the Palliative Care Outcome Scale, Dialysis Symptom Index, Kidney Disease Quality of Life, and Edmonton Symptom Assessment System.
11. What are the treatment options for these common symptoms?
A variety of treatment options exist with a wide spectrum in the quality of the underlying evidence. See Table 80.1 for a summary of the general approach to three common symptoms that affect nephrology patients.
Support shared decision making
12. What is shared decision making?
Shared decision making is a collaborative process through which the clinician and patient arrive at a decision that is mutually agreeable to both of them and informed by the patient’s values and preferences. A shared expertise is necessary to develop a patient-centered plan of care—the clinician as the expert in current evidence and best practice, with the patient as the expert in his or her own values and preferences.
13. What characteristics of patients with kidney disease underscore the importance for shared decision making in this population?
Limited life expectancy: Survival among patients with ESKD is comparable to many common malignancies, and 1-year mortality for nursing home patients initiated on dialysis is more than 50%. Shared decision making is therefore an essential mechanism to deliver care that is consistent with patients’ values and preferences.
Unmet symptom and end-of-life needs: Nephrology patients report substantial unmet needs in palliative care, and hospice use remains low for ESKD patients. Shared decision making encourages providers and patients to discuss and plan for future burdens and setbacks related to a given treatment path.
Modality selection: For those initiating renal replacement therapy, modality selection is fundamentally based on the process of shared decision making.
14. How can prognostication facilitate shared decision making?
Most patients want to hear prognostic information. Knowing their prognosis may help patients make decisions that are consistent with their values and preferences and be more engaged in their care, not just with nephrology providers, but with their family and/or surrogate decision makers.
15. Are there tools to help estimate prognosis?
Validated prognostication tools have been described in the literature. It is important to emphasize that these tools share the same limitations as any prediction algorithm; the accuracy of their results tends to be highest at an aggregate, population level. Their accuracy is limited in evaluating individual patients. Table 80.2 describes some of these prediction models.