Invitation to assess readiness to have conversation:
“Can we talk about how things have been going with your kidney disease?”
Using open-ended “big-picture” questions to assess care goals and preferences:
“What is life like outside the hospital?”
“What is most important to you now?”
“What are you hoping for?”
Outline barriers to decision-making:
“As you think about the future what worries you most?”
Propose a plan that meets the patient’s goals:
“Now that I understand what’s important to you, can I make a recommendation?”
These conversations often arouse feelings of uncertainty and strong emotions. Just as important as providing necessary medical information, the clinician must also recognize and respond to patients’ emotional concerns. Unattended emotion is associated with distress and may impact a patient’s ability to process information and meaningfully participate in discussions of decision-making [44]. Table 17.2 includes examples of patients’ responses to affective concerns and dealing with uncertainty [45, 46]. Acknowledging emotion allows providers to move forward with discussions in a way that patients can process the information and fully participate in decision-making [47].
Table 17.2
Empathic responses to affective concerns
Responding to emotional concerns (verbal empathy): N-U-R-S-E Name the emotion: “You seem worried” Understand: “I can understand this is disappointing” Respect: “You have shown a lot of strength” Support: “We will get through this together” Explore: “Tell me more” |
Responding to uncertainty: Name the uncertainty Respond to emotional response Offer support, “What can we do for you given we don’t know for sure how things will go?” Reassure your commitment, “I’ll stick with you throughout this” |
Giving a Recommendation
After consideration of the medical facts and the patient’s big-picture goals, the provider can offer a recommendation regarding dialysis. This recommendation must consider the balance of potential benefits and burdens of dialysis , from the patient’s point of view. For patients who are critically ill, the decision may be to focus on comfort and not initiate dialysis. In the case of clinical uncertainty, the decision may involve proposing a trial of dialysis for a period of time in hopes of achieving proposed clinical and quality of life milestones.
Time-limited trials are beneficial when there is a medical uncertainty. Through defining a trial of treatment, the provider can outline a plan which names the goals of the patient and a meeting time to assess whether these goals are being achieved with the current plan. Just as important as outlining the success with dialysis, providers should also outline what may happen if things do not go as desired. This sets up the opportunity to initiate advance care planning (ACP) and elicit end of life preferences.
Case Continued
MJ is started on continuous renal replacement. She clinically improves and is transitioned to intermittent hemodialysis three times a week through a tunneled dialysis catheter. She is transferred to a skilled nursing facility for continued physical therapy and rehabilitation. She complains of persistent fatigue, which is worse after dialysis sessions. She has significant pain in her lower extremities concerning for neuropathy related to prior chemotherapy, further limiting her functional capacity. After two hospitalizations for infections related to her dialysis catheter, she becomes bedbound and requires assistance in all her activities of daily living.
How to manage a dialysis patient who is clinically declining?
Role of Palliative Care in Cancer Patients with AKI
Care of the cancer patient with kidney disease may be optimized through involvement of palliative care services and ongoing communication between oncology and nephrology care team . Palliative care is an interdisciplinary team composed of physicians, nursing services, social workers and chaplains that can provide symptom management and ACP with timely transition to hospice services when appropriate. In patients with advanced non-small cell lung cancer, early palliative care in addition to standard oncologic care resulted in improved quality of life and decreased incidence of depression [48]. Patients with kidney disease, independent of cancer, suffer from comparable burdens and mortality risk, as do patients with cancer. Therefore, early attention to palliative care domains, such as symptom management and ACP, is warranted .
Symptom Management
Symptoms in CKD, with or without dialysis, are common and independent of cancer diagnosis . These patients suffer from a substantial burden of debilitating physical and psychological symptoms resulting in significant impairment in their quality of life [49–52]. Yet, over 50 % of these symptoms are undertreated [53]. Fatigue and pain are the most commonly encountered symptoms, others being pruritus, depression, nausea and vomiting, sleep disturbances, muscle cramps, anorexia and sexual dysfunction [54–56]. Data suggest primary care providers may prescribe pharmacologic therapy, particularly for emotional symptoms, rather than nephrologists [53]. Considering the increasing prevalence of end-stage kidney disease (ESKD), the momentous burden of distressing symptoms in these patients and their impact on overall quality of life, it is crucial for both nephrologists and primary care providers to have a better understanding of symptom management in order to provide patient-centered care. Tables 17.3 and 17.4 briefly outline the guidelines for symptom management in advanced CKD [55–58]. Additional attention must be paid to medication dosing with appropriate adjustments for the degree of renal impairment .
Table 17.3
Analgesia in end-stage renal disease
Drug | Rationale for recommendation/metabolic considerations | Dose adjustment for ESKD | Additional comments |
---|---|---|---|
Safe | |||
Acetaminophen | Safe alternative to NSAIDs | No | For mild-to-moderate pain, exhibit caution if coexistent liver disease |
Fentanyl | Hepatic metabolism, no active metabolites | Yes | Opioid of choice |
Methadone | Excreted in feces, no active metabolites | Yes | Opioid of choice |
Use with caution | |||
Tramadol | Ninety percent metabolites excreted by kidneys | Yes | Risk of serotonin syndrome with selective serotonin reuptake inhibitors |
Oxycodone | Hepatic metabolism. Less than 10 % renally excreted, limited data on safety in CKD | Yes | For moderate-to-severe pain |
Hydromorphone | Active metabolite is renally excreted. Monitor for neurotoxicity, myoclonus | Yes | For severe pain |
Gabapentin | Excreted unchanged in urine. Accumulation in CKD can cause somnolence, dizziness, and gait disturbances | Yes | For neuropathic pain |
Not recommended | |||
Nonsteroidal anti-inflammatory agents (NSAIDs) | Risk of gastrointestinal bleeding, hypertension, fluid retention. Decline in residual renal function in peritoneal dialysis | Avoid use | – |
Morphine | Active metabolites are renally excreted; accumulation in CKD can cause neurotoxicity, seizures, and central nervous system and respiratory depression | Avoid use | Can be used with caution in terminal patients |
Meperedine | Active metabolite is renally excreted, accumulation in CKD can cause neurotoxicity, seizures | Avoid use | – |
Table 17.4
Non-pain symptom management in end-stage renal disease
Symptom | Management |
---|---|
Fatigue | Optimize dialysis dose to ensure adequate clearance |
Treat anemia with intravenous iron and/or erythropoietin | |
Encourage regular exercise and physical therapy | |
Evaluate for and treat depression | |
Evaluate for and treat sleep disturbances | |
Pruritus | Optimize dialysis dose to ensure adequate clearance |
Treat secondary hyperparathyroidism | |
Reinforce adherence to phosphate binders and low-phosphorus diet | |
Use emollients, oral antihistamines | |
Other treatment options include neurontin, capsaicin cream, and phototherapy with UVB light | |
Sleep disturbances | Encourage sleep hygiene |
Avoid caffeinated beverages, tobacco, or alcohol in the evening | |
Evaluate for and treat sleep apnea | |
Treat with benzodiazepines once sleep apnea is ruled out | |
Anorexia | Optimize dialysis dose to ensure adequate clearance |
Evaluate for and treat depression | |
Treat nausea with antiemetics | |
Minimize anticholinergic agents to prevent dry mouth | |
Trial of zinc supplementation to treat taste disorders | |
Trial of appetite stimulants (e.g., megestrol, low-dose mirtazapine) | |
Overall assessment of clinical status | |
Nausea and vomiting | Optimize dialysis dose to ensure adequate clearance |
Treat with antiemetics (ondansetron and metoclopramide) | |
Trial of haloperidol for refractory nausea | |
Sexual dysfunction | Evaluate for and treat hormonal dysregulation (low testosterone levels, hyperprolactinemia) |
Evaluate for and treat depression | |
Trial of phosphodiesterase inhibitors if not contraindicated |
Advance Care Planning and Hospice Services
One of the important components of the comprehensive treatment plan for patients with kidney disease, particularly those with cancer, is ACP . ACP encompasses dynamic, ongoing communication among physicians, patients, and their families addressing the patient’s goals for care, including preferences for end of life care [59]. The limited life expectancy in patients with ESKD, either with or without dialysis, warrants early initiation of ACP [60]. Timely instituted discussions regarding goals of care allow patients to better understand their illness and develop a realistic perspective about the role of intensive medical interventions. Patients who engage in these discussions tend to undergo less intensive care and fewer life-prolonging therapies and are more likely to enroll in hospice care in their final week of life. Furthermore, longer hospice stays (> 1 week) are associated with better quality of life in patients, which in turn is associated with an improvement in self-reported quality of life and lower incidence of depression among surviving caregivers during the bereavement phase [61] .
Despite the increasing recognition of the need for ACP in the dialysis population, only a minority of them have written advance directives [62, 63]. The end-of-life experience for dialysis patients is likely a reflection of inadequate ACP. Wong et al. [64] examined treatment intensity and outcomes in dialysis patients during the last month of life. Dialysis patients were more likely to undergo intensive therapies, including admission to ICU, and less likely to receive appropriate hospice services compared to those with cancer and heart failure.