Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population
Review Article | Palliative Medicine and Palliative Care for Other Serious or Advanced Diseases

Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population

Helena I. Kurniawan1,2 ORCID logo, Kate R. Sciacca3,4, Melissa W. Wachterman3,4,5,6, Samantha L. Gelfand3,4,5,7

1Division of Nephrology, Cooper University Hospital, Camden, NJ, USA; 2Cooper Medical School of Rowan University, Camden, NJ, USA; 3Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; 4Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, MA, USA; 5Harvard Medical School, Boston, MA, USA; 6Section of General Internal Medicine, Veterans Affairs Boston Health Care System, Boston, MA, USA; 7Renal Division, Brigham and Women’s Hospital, Boston, MA, USA

Contributions: (I) Conception and design: HI Kurniawan, SL Gelfand; (II) Administrative support: SL Gelfand, MW Wachterman; (III) Provision of study materials or patients: All authors; (IV) Collection and assembly of data: HI Kurniawan, SL Gelfand, KR Sciacca; (V) Data analysis and interpretation: All authors; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

Correspondence to: Samantha L. Gelfand, MD. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, MA, USA; Harvard Medical School, 450 Brookline Avenue, Boston, MA 02215, USA; Renal Division, Brigham and Women’s Hospital, Boston, MA, USA. Email: samantha_gelfand@dfci.harvard.edu.

Abstract: With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.

Keywords: Chronic kidney disease (CKD); palliative care; nephrology; outpatient; geriatric


Submitted Nov 01, 2023. Accepted for publication Mar 18, 2024. Published online Apr 26, 2024.

doi: 10.21037/apm-23-575


Introduction

Background

Palliative care is a rapidly growing field. While it originated in oncology, palliative care is now being integrated into the care of patients with non-malignant chronic illnesses such as advanced liver disease, advanced heart disease, and advanced kidney disease. Each of these medical conditions are serious illnesses and often warrant more support than is currently available within the specialty alone. Throughout its evolution, palliative medicine has come to advocate for a focus on the humanity of medicine. Kidney palliative medicine includes symptom management, psychosocial support, and aid in decision-making (1,2).

In the outpatient or ambulatory clinical setting, kidney palliative care aims to enhance communication, coordination of care, and goal-concordance of treatment choices for patients who are experiencing progressive loss of kidney function over time and may progress to permanent kidney failure [end-stage kidney disease (ESKD)]. This manuscript reviews common themes and practices in outpatient palliative care for patients with advanced kidney disease; practices related to inpatient kidney palliative care and dialysis-unit based kidney palliative care are described elsewhere (3,4).

Chronic kidney disease (CKD) affects 14% of the US population and is highly prevalent among older people (5,6). Since most CKD results from chronic systemic conditions such as diabetes, hypertension (HTN), and vascular disease, it follows that the age group with the highest rates of these illnesses also has the highest rates of CKD. Thirty-four percent of people over 65 years old have CKD compared to 12% among those aged 45–64 years and 6% among those aged 18–44 years (5). A significant portion of outpatient CKD care involves preparing for the possibility of disease progression to kidney failure, which manifests as the development of diuretic-refractory volume overload or uremic symptoms including day-night reversal, pruritus, nausea, dysgeusia, weight loss, restless legs, and, in advanced cases, obtundation, myoclonus, and pericardial effusion (7). The process of educating older patients and their loved ones about kidney failure is complex as it requires iterative shared decision-making (SDM) and significant advance care planning (ACP) conversations. Palliative care skills, including describing prognosis, eliciting priorities and values, and aligning treatment plans with individuals’ goals of care, are essential for optimizing CKD care among older patients.

Principles of care—case vignettes

SDM

Vignette 1

Mrs. M is an 86-year-old woman with CKD stage 4, HTN, coronary artery disease (CAD), congestive heart failure with reduced ejection fraction (HfrEF) of 35%, and type 2 diabetes mellitus (T2DM) who presented to the palliative clinic. During her last appointment in the renal clinic, her nephrologist told her that CKD has been slowly progressing for the last ten years, with a more rapid progression within the last year. The clinician asked Mrs. M for permission to discuss options going forward with CKD care as her disease progresses.

The concept of SDM is crucial to optimizing care for patients with progressive CKD (8). SDM is achieved when clinicians share the best available evidence with the patient/family and ensure understanding as well as provide support throughout the decision-making process. With both medical information and personal preferences, a decision can then be made collaboratively (9). In nephrology, SDM should be applied to decisions related to kidney failure treatment options, which include dialysis, transplantation, and conservative kidney management (CKM). CKM can be an appropriate choice over dialysis when the survival benefit of dialysis is diminished or eliminated due to age and severity of illness (10). If dialysis is selected, SDM can also be appropriate for decisions regarding dialysis modality and vascular access selection (11,12). For example, depending on their overall prognosis, not every patient who chooses to initiate hemodialysis is a good candidate for arteriovenous fistula (AVF) placement. AVFs are associated with frequent access intervention and a separate set of complications that may not outweigh the benefits of AVF creation such as lower infection risk, particularly in patients with compounding comorbidities of advanced age and other serious illness (13). Recent guidelines have recommended that a patient planning for HD initiation may be better suited to an arteriovenous graft (AVG) or even a tunneled dialysis catheter (TDC) if their estimated survival is less than 1 year (3,14,15).

Through the utilization of palliative care communication skills, clinicians can explore understanding, validate patient concerns, elicit hopes and worries, and lay the groundwork to make an appropriate recommendation for the patient rooted in their goals and values (Figure 1) (16,17).

Figure 1 Shared decision-making in patients with advanced kidney disease (original work of author S.L.G.). QOL, quality of life.
Vignette 1: case continued

The palliative care team asked Mrs. M about quality of life (QOL), hopes and worries, and goals for the future. Mrs. M said that she did not want to suffer, and that preserving and maintaining her current lifestyle was most important, even more important than living as long as possible. She lived alone, with closest relatives over 200 miles away. She cooked meals, did laundry, and managed her own finances. She received assistance for groceries and house cleaning.

The nephrologist and palliative care team provided information and resources regarding dialysis and CKM. They gave Mrs. M a sense of what dialysis and CKM would entail for her specifically, and how each would impact her daily routines. They also shared bad news, that most people of her age with heart failure may not live longer than a few years with either therapy. Equipped with this information, she shared that she would prefer the medical management strategy of CKM over dialysis initiation, and the palliative care team affirmed that they also felt that CKM was the treatment option best aligned with her priorities.

Elements of SDM that were implemented in this case included fostering choice awareness, informing about options, discussing patient preferences, and ultimately making a decision together (18). CKM is a valid option in this case because of the patient’s preferences and prognosis; observational studies show that advanced age and cardiovascular disease may decrease or eliminate the survival benefit of dialysis over CKM. Furthermore, dialysis may not enhance a patient’s QOL or independence, as functional decline is often noted within the first 6 months of dialysis initiation (10,19,20).

Psychosocial support and family engagement

Vignette 2

Mr. L is a 78-year-old man with stage 4 CKD, moderate stage Alzheimer’s dementia, HTN, and peripheral artery disease (PAD). He is having progressive difficulty caring for himself, and he requires significant help from an aid and family for activities of daily living (ADLs). Due to dementia, he was unable to retain prognostic information previously shared with him and each visit was like starting from scratch.

The involvement of the patient’s loved ones, family, caregivers, or other supports is essential in providing high quality palliative care to outpatients with advanced kidney disease. Starting dialysis, navigating procedures, and electively stopping dialysis are all common experiences and are so complex and emotionally fraught that it is helpful to have family involved when possible. With the help of a multidisciplinary team in palliative care, the team can help provide an additional layer of social and emotional support to the patient. Cross-sectional analyses have shown that older patients with CKD with lower social support are more likely to have frailty, lower mental status scores, and lower physical health composite scores (21). Certain demographics have been associated with higher risk of having a limited support system, including those who are male, Hispanic, have lower income, a lower level of education, smoke tobacco, and those who are not employed or participate in volunteer work (21). In turn, poorer social support was associated with poorer QOL (22).

Involving patient’s supports in serious illness care facilitates ACP and relationship building upstream of acute events. For patients with advanced kidney disease, the most common acute events (myocardial infarction, stroke, amputation, and infection) may temporarily or permanently affect the patient’s decisional capacity; in that setting, it can be very helpful for loved ones to already be familiar with the patient’s health conditions, prognosis, and wishes. Advance directives (assignment of a health care proxy or creation of a living will) may be useful and can be completed in the low-urgency outpatient setting. In addition, caregiver distress is high among those helping to care for patients with advanced kidney disease, and early connection to outpatient palliative care can be an opportunity for non-medical support from social work, chaplains, and dieticians (23).

Vignette 2: case continued

Mr. L frequently missed medical appointments until his daughter started accompanying him. The outpatient palliative care team helped her understand her father’s limitations with memory and mobility, which catalyzed her to become more involved in his care. Together with his nephrology team, the clinicians were able to discuss the anticipated trajectory of his kidney function and dementia, which allowed them to complete advance directive (Mr. L assigned his daughter as his healthcare proxy). His daughter was also informed about additional resources including online support groups for caregivers of patients with dementia and the option of meeting with the palliative care social worker if stress related to her father’s illness increased over time.

Selective deprescribing and symptom management

Vignette 3

Mr. C is a 69-year-old man with HTN, CKD, osteoarthritis, obesity, and T2DM. He lives at home with his wife, for whom he is the primary caretaker. He was recently referred to renal clinic for uncontrolled HTN and worsening kidney function. His kidney biopsy showed nodular sclerosis attributable to diabetes and a significant portion of irreversible tissue fibrosis and atrophy. Mr. C was overwhelmed by the new diagnosis from his biopsy and set about trying to lose weight to improve his HTN and T2DM control.

Another palliative care principle relevant to the geriatric population with CKD is selective deprescribing of medications to maximize QOL, minimize pill burden, minimize adverse effects, and mitigate cost. Polypharmacy is an epidemic in the geriatric population and drug-induced symptoms are the second leading medical issue geriatricians manage (24). It has only grown in prevalence and is frequently associated with increasing multimorbidity (24,25). The definition of polypharmacy includes the prescription of more than 5 drugs per individual (26). On average, geriatric CKD patients are prescribed more than 10 medications, which is similar to the rate of polypharmacy in other groups of geriatric patients (26). In addition, certain medication classes have been flagged as potentially non-beneficial or detrimental to the health of ESKD patients, which depending on the clinical situation may include proton-pump inhibitors, diuretics, quinines, alpha1-blockers, and HMG-CoA reductase inhibitors (27,28). Selective deprescribing has a role for patients across the spectrum of kidney disease and treatment modalities, including patients with CKD and those with kidney failure on dialysis or CKM (29).

A global review and meta-analysis of symptom burden in patients with CKD found patients with CKD to have poorer QOL, even post kidney transplantation, in comparison to patients who were never diagnosed with CKD (30). Many symptom scoring systems called patient-related outcome measures (PROM) have been used to quantify disease and symptom burden in this population, including the Kidney Disease Quality of Life (KD-QOL) instrument, the Integrated Palliative Care Outcome Scale-Renal (IPOS-Renal), the CKD Symptom Burden Index, the Dialysis Symptom Index, and the Chronic Kidney Disease Symptom Index (31). In all studies, fatigue was the most common symptom that patients with advanced kidney disease experienced, regardless of treatment modality. Among patients on dialysis, over 50% reported muscle weakness, heartburn, weight loss, poor sleep, dry skin, and poor mobility (32). In patients with CKD stage 4/5 or those receiving CKM, there was greater than 50% prevalence of poor mobility, bone or joint pain, drowsiness, and generalized pain (2). This shows that dialysis does not always alleviate symptoms of kidney disease in the patient population, and we can utilize palliative communication skills to navigate the conversations around dialysis or CKM management (9,33). Here we will discuss a patient who exemplifies how deprescribing and additional support in symptom management can be helpful to care and overall QOL.

Vignette 3, continued

When he presented to the palliative care clinic one month later, he was found to have symptomatic hypotension with dizziness on standing. He had lost 8 pounds intentionally and continued to take his medications regularly. His vital signs reflected a blood pressure of 90/60 mmHg and a heart rate of 50.

Upon review of his medication list, Mr. C was taking five different blood pressure medications, including amlodipine, metoprolol, hydrochlorothiazide, lisinopril, and hydralazine. With coordination between his nephrologist and his palliative care physician, Mr. C’s medication list was shortened to include only lisinopril and amlodipine, which adequately controlled his blood pressure and continued to provide renal protection against progression of his CKD. In deprescribing antihypertensive medications, Mr. C was able to decrease his pill burden as well as decrease adverse symptoms from polypharmacy, improving overall symptom management and QOL.

ACP

Vignette 4

Mr. H is an 82-year-old male veteran with CKD stage 5, renal cell carcinoma treated by right total nephrectomy, HTN and glaucoma who presents to the renal clinic to discuss therapeutic options with regards to his progressing CKD. In the past, he had been hesitant to discuss his wishes due to fear of being told his needs to start dialysis. Today he brings his son, who is his primary caregiver, to a joint appointment with his nephrologist and palliative care physician. He states that he has been fearful of discussing dialysis because he had a friend whose death he attributes to dialysis initiation.

In the outpatient clinic setting, a common focus of nephrology care is discussion of the anticipated trajectory of kidney disease and the risks, benefits, and alternatives of future treatment options. The purpose of this ACP is to deploy SDM prior to the onset of acute on chronic illness. The purpose of ACP is to help patients and families deepen their illness understanding, share their priorities, and minimize the risk of receiving goal discordant care as a disease process worsens (18). In addition to initial discussions, ACP can be revisited throughout the course of illness, as goals and priorities may change over time (34,35). ACP work can be verbal and does not automatically require the completion of a written advance directive, though many formal tools do exist for documentation of wishes and conversations including the use of an advance directive or a Physician Order for Life-Sustaining Treatment (POLST) form (18,36). ACP is imperative to the CKD population due to the progressive nature of the disease.

Patients are stakeholders in this framework, and their engagement is crucial to successful ACP (31,37). It is very important that, if possible, the patient’s health care proxy (HCP) be involved in ACP discussions. This is, in part, because the decisions made through ACP may be carried out largely outside of the outpatient clinical setting. Furthermore, while ACP can be documented in an accessible way, if the patient loses decisional capacity, the health care proxy may still be called on to be the decision-maker (37). In addition, tools can be used to identify patients who will benefit most from ACP, including the modified “surprise question” of “would you be surprised if your patient were to need dialysis within the next 12 months (31)?” Here we will discuss the utility of ACP in a patient case.

Vignette 4, continued

When asked about his goals, Mr. H states that he would like to be around to watch his granddaughter graduate from college. He has good functional status and is able to conduct all ADLs independently. He said that he would undergo dialysis if necessary to survive until his granddaughter’s graduation, with the caveat that stopping dialysis could always be considered if it became too emotionally or physically exhausting. He initiated dialysis and noted that he would not like clinicians to attempt resuscitation or place him on a breathing machine. He completed a POLST form to reflect these wishes, with one copy for his medical chart and the other for his personal files to keep at home.

Though all clinicians are to some degree familiar with the concept of ACP, the degree of comfort with which providers are willing and able to discuss such topics varies widely across clinical practice (38). Integrating palliative care into such specialties can increase implementation of these skills in practice and subsequently increase other specialties’ level of skill and comfort.

Electing to stop dialysis

Vignette 5

Mr. W is an 87-year-old male veteran with ESKD who has been on HD for the last 5 years. He tolerated his thrice weekly treatments largely without issue, but recently has been admitted to the hospital every 3 weeks due to missed treatments and subsequent overwhelming fatigue and nausea. Mr. W never married or had children, and his closest relative and health care proxy is his niece, who lives about 30 miles away from him. When queried about his missed treatments, the patient reports recurrent gastrointestinal upset; no etiology was ever found and each episode self-resolved.

Elective or semi-elective cessation of dialysis is the third most common cause of death for patients on dialysis after cardiovascular events and infection. It accounts for an estimated 30% of death in the ESKD population in North America, and rates of stopping dialysis have doubled between 1995–2010 (18). Stopping dialysis can be a sensitive subject for multiple reasons, including religious beliefs, ethical and legal considerations, and cultural taboo (18). In a review of dialysis cessation patterns worldwide, many reasons may factor into a patient’s decision (18). These reasons can be grouped into medical and psychosocial reasons. It is very common for another health event (such as a stroke or hospitalization) to precede a patient’s decision to stop dialysis. Here we illustrate the role of elective dialysis cessation in a patient case, and the use of palliative communication skills in order to achieve this.

Vignette 5, continued

The patient stated that dialysis was becoming burdensome but that he viewed stopping it as a form of suicide, stemming from his devoutly religious upbringing. We reframed that stopping dialysis does not constitute suicide, but rather a way to allow an illness to follow its natural course (9). With the support of his niece, Mr. W eventually chose to withdraw dialysis. He died peacefully in home hospice 2 weeks later.

The decision to stop dialysis was an exercise in the patient’s autonomy and was made feasible by collaborative efforts between the nephrology and palliative care teams, the patient’s HCP, and the patient himself. Furthermore, navigating this decision exemplifies the principle of nonmaleficence and allowed for the clarification that dialysis withdrawal is not equivalent to euthanasia. Stopping dialysis in such a case reflects empowerment of the patient’s autonomy and is ethically sound. Euthanasia involves the administration of medication to terminate life, whereas death from stopping dialysis is a form of allowing natural death due to illness (18).

Models of outpatient palliative care for patients with kidney disease

Many models of palliative care have been developed to align with specialties such as oncology, neurology, cardiology, and infectious disease. Several models of palliative care for patients with kidney disease exist including inpatient, outpatient, stand-alone, and embedded care delivery. The involvement of palliative care has been associated with increased ACP, patient and caregiver satisfaction, and less healthcare utilization (39).

Specialty palliative care in the outpatient setting ideally utilizes an interprofessional team that can also cover inpatient and community care settings (36). Staffing and resources of outpatient palliative clinics vary widely, and the lines occasionally become blurred between what defines a stand-alone clinic and an embedded clinic (39). Stand-alone clinics refer to palliative care clinics that traditionally are staffed only by palliative care providers and see patients only for palliative needs, whereas embedded clinics include staff not only from the palliative department, but also the subspecialty of concern when referring to palliative care (40). Palliative care clinics have found that with therapeutic measures to aid in coping, there was an association with improved QOL and depressive symptoms; with addressing ACP, there was greater hospice use (37).

Though embedded clinics have been touted as the optimal model for care of subsets of palliative patient populations, co-management can be challenging in practice, as the structure of embedded clinics is not always clearly delineated (41,42). The optimal method for kidney palliative care has not been well-defined (37). There is emerging evidence for the outcomes of palliative care programs serving renal patients. One embedded model in a nephrology clinic in Australia has been shown to have a positive impact on QOL and symptom relief (43). In another embedded model in a New York City hospital, the majority of nephrologists shared an office with the palliative care clinic (37). The palliative team itself was multidisciplinary, comprised of a physician, registered nurse, social worker, and nutritionist. Despite general agreement that CKD patients needed palliative support, there was apprehension that came mostly from nephrologists, who were concerned about the addition of yet another appointment to their patients’ schedules, as well as loss of physician autonomy with practice changes (37). Instead, this is an opportunity to provide a continuity of care “extension”, between the patient’s nephrologist and palliative team, rather than a sense of “abandonment” from the nephrologist.

The decision of when to refer kidney patients to palliative care depends on several factors including regional accessibility to specialized palliative care, patient symptom burden, and stage of kidney disease. The bandwidth in palliative care is insufficient to cover patients in all stages of serious illness (36,44). Generally, patients are recommended for palliative care referral when their emotional or physical symptom burden becomes severe or if there are complicated psychosocial factors that may influence health outcomes. In CKD, this is usually when patients reach CKD stage 4 or 5. Reasons for potentially late referral include late referrals to nephrology, lack of insight within the medical community with regard to palliative care, and initial patient refusal from fear or lack of knowledge of palliative care (40).

A set of guidelines from Australia and New Zealand in 2013 regarding renal supportive care suggests primary nephrology responsibility in initiating dialysis planning conversations in the later stage CKD population (stages 4–5), with the utilization of a multidisciplinary team including a referral to palliative care if the decision to pursue dialysis remains uncertain (31). Patients with CKD tend to follow a longer and more unpredictable trajectory of decline towards end-of-life in comparison to cancer patients making it more complicated to know which subset of patients with CKD palliative care efforts should be focused towards (45-47).

An additional niche model of palliative care that has been trialed in the advanced CKD and ESKD population has been concurrent hospice and dialysis. This model has been implemented in the Veterans Affairs Medical System (VAMC). A retrospective study of the VAMC population enrolled in the US Renal Database System (USRDS) from 2007–2016 found that the majority of concurrent dialysis treatments in hospice care were financed through the VA (87%), regardless of if the patient was enrolled in hospice through the VA or Medicare (48). Furthermore, the study found that patients enrolled in VA-financed hospice were much more likely to receive at least one session of concurrent dialysis in comparison to Medicare-financed hospice patients. This was also associated with a longer hospice length of stay in the VA-financed hospice patients, and raised the question of the current Medicare hospice coverage policy.

Interdisciplinary roles

It is widely accepted that when practicing palliative care, an interdisciplinary model of patient care can provide the most robust patient/family support and care. A group with intersectional roles and skills is crucial to support geriatric patients with CKD successfully. Barring other comorbid health issues that might trigger a referral to the palliative care team such as malignancy, end-stage liver disease (ESLD), or heart failure, the nephrology team may have the opportunity to be the first provider group to consider palliative care referral. Training in nephrology programs is often lacking in palliative care skills, though there has been increased recognition of a growing need for this skill set as the CKD population is aging and living longer than ever before (34,44,45,49).

As specialty kidney palliative care continues to expand as a field, much work remains to be done to develop and shape this frontier. Key components of the palliative care team include the resources of a chaplain, a palliative care social worker, and, in some cases, a speech and language pathologist and a registered dietitian. Chaplains provide unique support within a palliative team; their responsibility can be caring for the social, spiritual, and emotional well-being of the patient and their caregivers (49). Spirituality and belief systems are a key part of the identity of many, and being able to address and validate this only serves to better provide holistic care to patients. While this does not necessarily require involvement of prayer or aligned religious beliefs on the part of the chaplain or the rest of the palliative team, this only serves to better treat and understand the patient—allow them to be heard, find peace and healing, and support what is important to them (49).

The dietitian, whether associated with the palliative care team or independently referred via the nephrology team or primary provider, also plays a crucial role in the management of the geriatric patient with CKD. Once referred, the patient can receive instruction specific to their CKD needs, whether it be electrolyte derangements such as hyperkalemia, hyperphosphatemia, or hypercalcemia, renal stone-specific diets, or vigilance in protein calorie nutritional intake. Patient dietary needs can also vary based on individual patient goals; optimal dietary management in a patient receiving CKM may favor a more liberal diet, whereas a patient on dialysis will be encouraged to follow a stricter renal diet to maintain nutritional, electrolyte, and fluid balance (50). Specifically, dietary management can be tailored to aid in symptom management rather than disease progression, to emphasize the concept that eating patterns can be more important than individual foods, and to help decrease anxiety over dietary restrictions (50). This will continue to depend on reassessment of individual patient goals, as a patient in CKM may be recommended for a more liberal diet if they opt for more comfort-oriented measures.

The palliative social worker is another crucial component to patient care on the multidisciplinary team. Whereas a nephrology social worker typically aids in dialysis unit placement and transportation, the palliative social worker aids more in emotional support and advanced care planning. To place these team members solely in such confined roles does not do them justice. Social workers, whether they are associated with palliative care or nephrology, also have training in counseling and navigating family systems. Particularly for the CKD/ESKD population, patients often feel overwhelmed by their diseases processes even if their symptoms are well-managed (42,51). The addition of advanced age and further medical complexity such a frailty and social complexity such as lack of support, reflect the need for more robust resources in this patient population.

Lastly, as medical providers on the palliative care team, the physician and nurse practitioner (NP)/physician assistant (PA) on the team provide their expertise on symptom management and ACP. A significant component of palliative fellowship training that remains lacking in other specialties is communication skills education. Providers may utilize frameworks for serious illness conversations to effectively practice and teach communication in the setting of serious illness (16,17). Programs such as Nephrotalk, Geritalks, and VitalTalk also provide resources for discussing serious illness in these specific populations. All components of the palliative care team in collaboration with the nephrology team help with patient coping, symptom management, and family support.


Conclusions

The models and roles described above can be utilized in the provision of palliative care principles to patients with kidney disease, specifically the palliative care practices discussed previously; SDM, psychosocial support and family engagement, selective deprescribing, symptom management and thoughtful conversation about dialysis withdrawal. Utilizing these palliative care principles and working under a collaborative model between specialties, we can move one step closer towards the goal of minimizing suffering and maximizing QOL in patients with kidney disease. By ensuring strong communicating with colleagues, patients, and their supports, we can build better relationships. We anticipate this will take time and will require continued experimentation and augmentation of current palliative care models, as well as continued education of all stakeholders involved on both the patient and the provider sides to continue to work in collaboration.


Acknowledgments

Funding: None.


Footnote

Provenance and Peer Review: This article was commissioned by Guest Editors (Pragnesh Patel, Susan Nathan and Lara Skarf) for the series “Outpatient Palliative Care in Geriatric Clinics” published in Annals of Palliative Medicine. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-575/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-575/coif). The series “Outpatient Palliative Care in Geriatric Clinics” was commissioned by the editorial office without any funding or sponsorship. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. All clinical procedures described in this study were performed in accordance with the ethical standards of the institutional and/or national research committee(s) and with the Helsinki Declaration (as revised in 2013). Informed consent was not necessary, as the cases reported here are based on the cumulative clinical experiences of the authors, and do not represent specific individuals.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.


References

  1. Saunders C. The evolution of palliative care. J R Soc Med 2001;94:430-2. [Crossref] [PubMed]
  2. Lambourg E, Colvin L, Guthrie G, et al. The prevalence of pain among patients with chronic kidney disease using systematic review and meta-analysis. Kidney Int 2021;100:636-49. [Crossref] [PubMed]
  3. Lakin JR, Sciacca K, Leiter R, et al. Creating KidneyPal: A Specialty-Aligned Palliative Care Service for People with Kidney Disease. J Pain Symptom Manage 2022;64:e331-9. [Crossref] [PubMed]
  4. Grubbs V, Moss AH, Cohen LM, et al. A palliative approach to dialysis care: a patient-centered transition to the end of life. Clin J Am Soc Nephrol 2014;9:2203-9. [Crossref] [PubMed]
  5. Centers for Disease Control and Prevention. Atlanta (GA): Chronic Kidney Disease in the United States, 2023. 2023 May [cited 2023 Aug 3]. Available online: https://www.cdc.gov/kidneydisease/publications-resources/ckd-national-facts.html
  6. National Institutes of Health. Bethesda (MD): United States Renal Data System; 2022 Annual report [cited 2023 Aug 3]. Available online: https://usrds-adr.niddk.nih.gov/2022/chronic-kidney-disease/1-ckd-in-the-general-population
  7. Lam DY, O'Hare AM, Vig EK. Decisions about dialysis initiation in the elderly. J Pain Symptom Manage 2013;46:298-302. [Crossref] [PubMed]
  8. Grassi L, Caruso R, Costantini A. Communication with patients suffering from serious physical illness. Adv Psychosom Med 2015;34:10-23. [Crossref] [PubMed]
  9. Mechler K, Liantonio J. Palliative Care Approach to Chronic Diseases: End Stages of Heart Failure, Chronic Obstructive Pulmonary Disease, Liver Failure, and Renal Failure. Prim Care 2019;46:415-32. [Crossref] [PubMed]
  10. Verberne WR, Dijkers J, Kelder JC, et al. Value-based evaluation of dialysis versus conservative care in older patients with advanced chronic kidney disease: a cohort study. BMC Nephrol 2018;19:205. [Crossref] [PubMed]
  11. Elwyn G, Laitner S, Coulter A, et al. Implementing shared decision making in the NHS. BMJ 2010;341:c5146. [Crossref] [PubMed]
  12. Murea M, Grey CR, Lok CE. Shared decision-making in hemodialysis vascular access practice. Kidney Int 2021;100:799-808. [Crossref] [PubMed]
  13. Gelfand SL, Hentschel DM. Dialysis Access Considerations in Kidney Palliative Care. Semin Nephrol 2023;43:151397. [Crossref] [PubMed]
  14. Field Notes: Episode 35: How Percutaneous Procedures Can Help Patients Achieve Optimal Starts in Dialysis with Dr. Murat Sor Podcast. Available online: https://fmcna.com/insights/field-notes/optimal-starts-dialysis-murat/#:~:text=Optimal%20starts%20are%20generally%20defined,and%20improve%20outcomes%20for%20patients
  15. Crooks PW, Thomas CO, Compton-Phillips A, et al. Clinical outcomes and healthcare use associated with optimal ESRD starts. Am J Manag Care 2018;24:e305-11. [PubMed]
  16. NURSE Statements. VitalTalks. Available online: https://www.vitaltalk.org/guides/responding-to-emotion-respecting/
  17. Serious Illness Conversation Guide. Ariadne Labs. Available online: https://www.ariadnelabs.org/wp-content/uploads/2023/05/Serious-Illness-Conversation-Guide.2023-05-18.pdf
  18. Chen JHC, Lim WH, Howson P. Changing landscape of dialysis withdrawal in patients with kidney failure: Implications for clinical practice. Nephrology (Carlton) 2022;27:551-65. [Crossref] [PubMed]
  19. Morton RL, Snelling P, Webster AC, et al. Factors influencing patient choice of dialysis versus conservative care to treat end-stage kidney disease. CMAJ 2012;184:E277-83. [Crossref] [PubMed]
  20. Goto NA, van Loon IN, Boereboom FTJ, et al. Association of Initiation of Maintenance Dialysis with Functional Status and Caregiver Burden. Clin J Am Soc Nephrol 2019;14:1039-47. [Crossref] [PubMed]
  21. Chan CT, Blankestijn PJ, Dember LM, et al. Dialysis initiation, modality choice, access, and prescription: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int 2019;96:37-47. [Crossref] [PubMed]
  22. Slaven A, Hsu J, Schelling JR, et al. Social Support in Older Adults With CKD: A Report From the CRIC (Chronic Renal Insufficiency Cohort) Study. Kidney Med 2021;3:776-784.e1. [Crossref] [PubMed]
  23. Alshammari B, Noble H, McAneney H, et al. Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review). Healthcare (Basel) 2021;9:1212. [Crossref] [PubMed]
  24. Khezrian M, McNeil CJ, Murray AD, et al. An overview of prevalence, determinants and health outcomes of polypharmacy. Ther Adv Drug Saf 2020;11:2042098620933741. [Crossref] [PubMed]
  25. Wastesson JW, Morin L, Tan ECK, et al. An update on the clinical consequences of polypharmacy in older adults: a narrative review. Expert Opin Drug Saf 2018;17:1185-96. [Crossref] [PubMed]
  26. Masnoon N, Shakib S, Kalisch-Ellett L, et al. What is polypharmacy? A systematic review of definitions. BMC Geriatr 2017;17:230. [Crossref] [PubMed]
  27. Wanner C, Krane V, März W, et al. Atorvastatin in patients with type 2 diabetes mellitus undergoing hemodialysis. N Engl J Med 2005;353:238-48. [Crossref] [PubMed]
  28. Fellström BC, Jardine AG, Schmieder RE, et al. Rosuvastatin and cardiovascular events in patients undergoing hemodialysis. N Engl J Med 2009;360:1395-407. [Crossref] [PubMed]
  29. Whittaker CF, Fink JC. Deprescribing in CKD: The Proof Is in the Process. Am J Kidney Dis 2017;70:596-8. [Crossref] [PubMed]
  30. Hussien H, Apetrii M, Covic A. Health-related quality of life in patients with chronic kidney disease. Expert Rev Pharmacoecon Outcomes Res 2021;21:43-54. [Crossref] [PubMed]
  31. Brown MA, Crail SM, Masterson R, et al. ANZSN renal supportive care 2013: opinion pieces Nephrology (Carlton) 2013;18:401-54. [corrected]. [Crossref] [PubMed]
  32. Fletcher BR, Damery S, Aiyegbusi OL, et al. Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis. PLoS Med 2022;19:e1003954. [Crossref] [PubMed]
  33. Brown MA, Collett GK, Josland EA, et al. CKD in elderly patients managed without dialysis: survival, symptoms, and quality of life. Clin J Am Soc Nephrol 2015;10:260-8. [Crossref] [PubMed]
  34. Davison SN, Torgunrud C. The creation of an advance care planning process for patients with ESRD. Am J Kidney Dis 2007;49:27-36. [Crossref] [PubMed]
  35. Holley JL. Palliative care in end-stage renal disease: focus on advance care planning, hospice referral, and bereavement. Semin Dial 2005;18:154-6. [Crossref] [PubMed]
  36. Beasley A, Bakitas MA, Edwards R, et al. Models of non-hospice palliative care: a review. Ann Palliat Med 2019;8:S15-21. [Crossref] [PubMed]
  37. Hoerger M, Greer JA, Jackson VA, et al. Defining the Elements of Early Palliative Care That Are Associated With Patient-Reported Outcomes and the Delivery of End-of-Life Care. J Clin Oncol 2018;36:1096-102. [Crossref] [PubMed]
  38. Holley JL, Carmody SS, Moss AH, et al. The need for end-of-life care training in nephrology: national survey results of nephrology fellows. Am J Kidney Dis 2003;42:813-20. [Crossref] [PubMed]
  39. Gast KC, Benedict JA, Grogan M, et al. Impact of an Embedded Palliative Care Clinic on Healthcare Utilization for Patients With a New Thoracic Malignancy. Front Oncol 2022;12:835881. [Crossref] [PubMed]
  40. Hui D, Bruera E. Models of Palliative Care Delivery for Patients With Cancer. J Clin Oncol 2020;38:852-65. [Crossref] [PubMed]
  41. Wentlandt K, Weiss A, O'Connor E, et al. Palliative and end of life care in solid organ transplantation. Am J Transplant 2017;17:3008-19. [Crossref] [PubMed]
  42. Burns T, Fernandez R, Stephens M. The experiences of adults who are on dialysis and waiting for a renal transplant from a deceased donor: a systematic review. JBI Database System Rev Implement Rep 2015;13:169-211. [Crossref] [PubMed]
  43. Scherer JS, Wright R, Blaum CS, et al. Building an Outpatient Kidney Palliative Care Clinical Program. J Pain Symptom Manage 2018;55:108-116.e2. [Crossref] [PubMed]
  44. Kavalieratos D, Corbelli J, Zhang D, et al. Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA 2016;316:2104-14. [Crossref] [PubMed]
  45. Davison SN, Torgunrud C. The creation of an advance care planning process for patients with ESRD. Am J Kidney Dis 2007;49:27-36. [Crossref] [PubMed]
  46. Findlay MD, Donaldson K, Doyle A, et al. Factors influencing withdrawal from dialysis: a national registry study. Nephrol Dial Transplant 2016;31:2041-8. [Crossref] [PubMed]
  47. Holley JL. Palliative care in end-stage renal disease: focus on advance care planning, hospice referral, and bereavement. Semin Dial 2005;18:154-6. [Crossref] [PubMed]
  48. Wachterman MW, Corneau EE, O'Hare AM, et al. Association of Hospice Payer With Concurrent Receipt of Hospice and Dialysis Among US Veterans With End-stage Kidney Disease: A Retrospective Analysis of a National Cohort. JAMA Health Forum 2022;3:e223708. Erratum in: JAMA Health Forum 2022;3:e224512. [Crossref] [PubMed]
  49. Cooper RS. The Palliative Care Chaplain as Story Catcher. J Pain Symptom Manage 2018;55:155-8. [Crossref] [PubMed]
  50. Stevenson J, Meade A, Randall AM, et al. Nutrition in Renal Supportive Care: Patient-driven and flexible. Nephrology (Carlton) 2017;22:739-47. [Crossref] [PubMed]
  51. Eneanya ND, Goff SL, Martinez T, et al. Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients. BMC Palliat Care 2015;14:30. [Crossref] [PubMed]
Cite this article as: Kurniawan HI, Sciacca KR, Wachterman MW, Gelfand SL. Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population. Ann Palliat Med 2024;13(4):938-947. doi: 10.21037/apm-23-575

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