Comfort care. Palliative care. Supportive care. All of these terms feel weighty and may have slightly different meanings to healthcare providers. A recent Core Curriculum focuses on kidney supportive care and AJKD Social Media Editor Timothy Yau @Maximal_Change (AJKDBlog) interviewed the corresponding author, Samantha Gelfand @SammyG (SG), to accompany this important piece in the journal.
AJKDBlog: Can you give a quick definition of kidney supportive care and what it means to you as you wrote this Core Curriculum? Specifically, how does kidney supportive care differ from other concepts such as “end-of-life care”, “conservative care”, or “hospice care” for patients with kidney disease?
SG: Absolutely! Kidney supportive care (also called renal supportive care and kidney palliative care) is a broad term that encompasses all care focused on improving quality of life for patients living with advanced kidney disease. And “quality of life” itself is very broad – it means different things for different people, and has different relevance during different periods in life. I think of kidney supportive care as a focus on helping patients (and their families) cope with and live as well as possible with advanced kidney disease. Kidney supportive care therefore includes many different activities aimed at reducing suffering, including physical and psychological symptom reduction, social work services, spiritual health care, dietary advice and support, and decision-making support.
Domains of kidney supportive care. Figure 1 from Gelfand et al, AJKD © National Kidney Foundation.
How is kidney supportive care different from end of life care? I would say it is the same way that “nephrology” is different from “dialysis”! Kidney supportive care is absolutely helpful at end-of-life, since that is a time when symptoms and stress related to medical decision-making can be very intense. However, kidney supportive care can be extremely useful well before end of life, and can be offered to patients on any form of treatment and in any care setting, whether they have CKD and are followed in an outpatient clinic, ESKD on dialysis, or even AKI in the hospital.
AJKDBlog: I love that example, and it makes so much sense when you say it’s like “nephrology” is different from “dialysis”! You mention that countries such as Canada, Australia, and the UK have more robust supportive care programs for kidney patients when compared to the US. What are some of the reasons for this, and what is being done to try and address this issue?
SG: Yes, many countries have incorporated the principles of palliative care into the approach to patients with advanced kidney disease for several decades now. In the US, as a result of the complex history and development of the hospice and dialysis industries, there is a common misperception (among medical providers and patients) that palliative care is somehow incompatible with routine medical care. It’s not! Palliative care is not the same as hospice, which in the US is limited to patients who have less than six months expected survival and who want comfort-focused care rather than life-prolonging therapies as they near the end of life. Palliative care, on the other hand, is appropriate at any stage in a serious illness and can be provided along with curative treatment (hence the trend of referring to it as “supportive” care).
I think there has been a great increase in awareness among nephrologists in the US about the lived experience of their patients, and kidney supportive care programs are growing. There is also major interest among nephrology fellowship directors to increase training in communication skills necessary to help patients and their families navigate medical decisions.
AJKDBlog: Table 2 is really striking, and demonstrates the high frequency of physical and psychological symptoms that patients with advanced kidney disease experience. There has been a big push to address some of these patient-reported outcomes. What are some of the most prevalent symptoms that nephrology healthcare providers are likely to face, and how can they address them with patients?
Table 2 from Gelfand et al, AJKD © National Kidney Foundation.
SG: Advanced kidney disease brings a whole host of physical and emotional burdens. The most prevalent symptoms are fatigue, pain, pruritus, poor sleep, anxiety, and depression. The best (and only!) way to address these symptoms is to ask patients about them in a systematic and iterative way. There are two parts to the task: determining what symptoms a patient has, and determining how distressing the symptoms are. There are a lot of provider-level barriers to this (eg time, limited experience, therapeutic nihilism, etc), which may lead nephrologists to ask, “Why should I ask about a symptom if there is nothing to be done for it?” I would argue that many symptoms can be alleviated, if not eliminated, and furthermore there may be therapeutic benefit to expressing interest and concern even in symptoms that cannot be resolved.
AJKDBlog: Let’s take one of those symptoms as an example. Pruritis, or itching, is one of those symptoms that can be really difficult to address. Some exciting data is coming out pertaining to pharmacologic therapy like difelikefalin. What is your treatment approach to patients who experience uremic pruritis?
SG: Pruritus certainly affects patients with ESKD on dialysis, but it is also experienced by patients with advanced CKD who are not on dialysis. Although much remains to be understood about its pathogenesis, there is evidence that uremic pruritus is mediated by non-histaminergic neural pathways. Therefore, we do not routinely use antihistamines in our treatment approach, which is outlined in the Figure 2.
Treatment approach for uremic pruritus.aCommon clinical practice despite lack of evidence that hyperphosphatemia, hyperparathyroidism, or increasing Kt/V over usual adequacy standards has any relationship to the sensation or alleviation of pruritus.bCaution and close monitoring is recommended with any off-label use of calcium channel alpha-2-delta ligands. Abbreviations: HD,hemodialysis; Lab, laboratory; LFTs, liver function tests; PTH, parathyroid hormone; QHS, every bedtime; QOD, every other day. Figure 2 from Gelfand et al, AJKD © National Kidney Foundation.
In our experience, a significant reduction of uremic pruritus can be achieved through topical emollients and off-label use of oral calcium channel alpha 2-delta ligands such as gabapentin or pregabalin. Adverse effects of these medications are possible and should be minimized by using low doses in the setting of diminished GFR. For refractory pruritus, there is a host of other potentially therapeutic options, including topical agents and UV light. Additionally, as you mention, a recent industry-sponsored randomized controlled trial of intravenous difelikefalin, a peripherally restricted selective kappa opioid receptor agonist, showed reduction of moderate to severe pruritus among patients on hemodialysis who had not been treated with gabapentinoids.
AJKDBlog: The section on care for “Advanced CKD in the Outpatient” really focuses on a comprehensive approach that is not focused simply on GFR decline, transplant, and dialysis. What are some takeaways that we can use to help maximize quality of life in patients who choose to not pursue dialysis as a life-sustaining therapy?
SG: First, it’s important to offer non-dialytic management as an option. Many patients on dialysis feel they were never even told about it. Second, I think the key to success with non-dialytic management is having a really thorough exploration of the person’s prognostic awareness, values, and priorities. What is their understanding of their illness? What brings them joy, meaning, or a sense of identity or belonging? What were they like before becoming ill? What matters most to them if they get sicker? What do they hope for, and what are they worried about? How have their family or loved ones been involved or affected by their illness? The answers to these questions will help guide and customize care for advanced kidney disease without dialysis, which evolves over time depending on the clinical context and patient priorities.
AJKDBlog: We have all encountered the patient in Case 5 – an older patient with recurrent cancer, severe sepsis, AKI on CKD, and the dilemma of whether offering dialysis is beneficial or not. You mention a “time-limited trial” of dialysis and non-dialytic medical management of symptoms as care options. Can you expand on these two approaches?
SG:A time-limited trial of dialysis is essentially an agreement that the patient will undergo dialysis for a pre-set period of time, during which the patient, their family, and their medical teams will assess for signs of benefit. The time period and the “signs of benefit” may vary. For example, patients with AKI in the ICU often have multiple reasons for altered mental status, and clinically it can be challenging to know whether uremic toxins are a significant contributor. A time-limited trial of dialysis in the ICU may be for 3-5 days, and if the patient’s mental status does not improve during that time, we can be relatively certain that uremia was not the main cause of it. This would be grounds for an interdisciplinary family meeting to discuss an ongoing care plan.
Other time-limited trials of dialysis may be for a longer periods. In a patient with AKI in the setting of newly diagnosed cancer, a time-limited trial of several weeks may be beneficial for a number of reasons – it gives the patient and family time to process the new diagnoses, gives them a sense of what a life on dialysis is like, gives the kidneys a chance to recover function, and may give the oncology team time to provide helpful information about treatment options and prognosis. Most importantly, trials of dialysis provide time to do some of the more challenging emotional work of sorting out patients’ and their loved ones’ hopes, worries, priorities, and prognostic awareness, all of which should directly influence their care choices. Involving specialty palliative care to assist with this exploration during such a vulnerable time may be helpful, if available.
Non-dialytic management of AKI in the hospital is also possible, though you have to be clear about the patient’s prognosis, which means expected course of an illness. In an anuric patient who shows no signs of impending kidney recovery, prognosis is usually on the order of days to a week without dialysis, and non-dialytic management needs to be explicitly explained as comfort-focused care at the end of life. This may or may not be coupled with enrollment in hospice services, depending on the patient’s preferences and local resources. In an oliguric patient with a borderline biomedical indication to start dialysis, such as mild-moderate hyperkalemia or volume overload, prognosis is much less certain, and maximal medical management without dialysis can be a viable option for weeks to months. Reasons for not starting dialysis should be explored in depth with the patient and family, as well as an “action plan” about preferences for care if the kidney function worsens further.
AJKDBlog: Lastly, you address that withdrawal from dialysis is the third most common cause of death of patients with kidney failure (after cardiovascular disease and infection). For patients who choose this option, do they have access to hospice? Would you ever continue dialysis to alleviate symptoms related to volume overload?
SG: Patients (or their surrogate decision-makers) may stop dialysis for a variety of reasons. The most common reason is a sudden medical complication (like a stroke) and the second most common is slow progressive debility (sometimes called “failure to thrive”). Yes, patients who stop dialysis can enroll in hospice. On average, they have a life expectancy of 7-10 days, although this may vary greatly depending on the patient’s residual renal function and other comorbidities. A person with even 200-300 mL of daily urine output can live for a very long time without dialysis!
Hospice options vary widely depending on local resources. If a patient has active symptoms such as pain or dyspnea, they may be eligible for inpatient hospice care (called “GIP” or General Inpatient Hospice). However, the vast majority of hospice care in this country is home hospice, which are services provided in the patient’s home, nursing home, or assisted living. It is important to know that home hospice is not 24/7 care. Most people on home hospice need additional support either from family member or other professional help. Home hospice involves regular visits to the home by home health aids, specialty trained nurses, social workers, and sometimes other therapists like psychologists, chaplains, and music or art therapists. Almost all home hospices provide 24-hour telephone support. Home hospice nurses teach loved ones how to administer medications for pain, agitation, and dyspnea that may occur during the dying process.
Continuing dialysis for the purpose of symptom control during hospice care makes a lot of sense medically but can be logistically and financially complicated. Insurance coverage for dialysis and hospice are separate Medicare benefits. Continuing dialysis while on hospice may be possible if the “hospice diagnosis” (i.e. the medical condition that limits the patient’s expected survival to less than 6 months) is not ESKD and not related to ESKD. For example, a patient on dialysis who is found to have metastatic cancer may be eligible to continue dialysis while receiving hospice services for cancer. However, this can be financially complicated and may not be possible in all areas Several leaders in kidney medicine and palliative care are currently advocating for policy reform that would allow for a limited time of concurrent dialysis and hospice.
AJKDBlog: Thank you for agreeing to the interview and taking the time to respond so thoughtfully to these tough questions!
To view the Gelfand Core Curriculum (FREE), please visit AJKD.org.
Title: Kidney Supportive Care: Core Curriculum 2020
Authors: Samantha L. Gelfand, Jennifer S. Scherer, & Holly M. Koncicki
DOI: 10.1053/j.ajkd.2019.05.018