Research Priorities for Palliative Care for Older Adults with Advanced Chronic Kidney Disease

Abstract

Older adults with advanced chronic kidney disease (CKD) often have multiple comorbid conditions, a high symptom burden, and limited life expectancy. There is mounting concern that the intensive patterns of care that many of these patients receive at the end of life are discordant with their values and preferences. The nephrology community has recognized that there are significant unmet palliative care needs in this population.

In this article, we identify three broad areas of knowledge deficit where more evidence is needed to support the “best care possible” for this population: (1) what matters most to older adults with advanced CKD and their caregivers near the end of life; (2) how the nephrology community can best support older adults with advanced CKD to navigate complex treatment decisions throughout their illness; and (3) how the healthcare system should be reconfigured to promote patient- and family-centered care for older adults with advanced CKD.

Research priorities include identifying opportunities for improving the end-of-life experience of older adults with CKD and their caregivers; developing and testing communication interventions before and during dialysis to ensure that treatment decisions reflect patients' preferences; and assessing the effectiveness of palliative care in improving quality of life for patients and caregivers, satisfaction with care, and aligning treatment decisions with patient goals and preferences.

Outline of the Scope of the Problem

Older adults with advanced chronic kidney disease (CKD) often have multiple other comorbid conditions and a limited life expectancy, and report a high symptom burden comparable to that of patients with terminal cancer.^1–3 As their illness progresses, many face complex treatment decisions about whether and when to accept treatments that might extend life, and there is growing concern that the intensive patterns of care (e.g., intensive care unit admission) that many of these patients go on to receive at the end of life might not reflect their values and preferences.⁴

Despite ongoing efforts to improve quality of care for patients with advanced CKD, these patients continue to experience substantial physical, emotional, and spiritual suffering.¹ Contemporary approaches to care tend to focus on optimizing disease management, and most providers are not trained to address the broad range of palliative care needs of these patients and their caregivers.^5,6 Patients with complex comorbidity and functional limitations often face competing health priorities and may not be optimally served by care models that focus on managing a single health condition.^7–9 Evidence is needed to improve current clinical practice to ensure that care is aligned with what matters most to older adults with advanced CKD and their caregivers, so that they can receive the “best care possible.”^10,11

Summary of the Current Evidence

In this article, we identify three broad priority areas for which we summarize currently available evidence, describe knowledge gaps, and propose research priorities. Priority areas include the following: (1) what matters most to older adults with advanced CKD near the end of life and their caregivers; (2) how the nephrology community can best help the patients navigate complex treatment decisions during the course of illness; and (3) how the healthcare system should be reconfigured to promote patient- and family-centered care for this population.

What matters most to older adults with advanced CKD and those who care for them near the end of life?

During the final months of life, many older patients treated with dialysis receive intensive patterns of care intended to lengthen life and address disease complications (e.g., mechanical ventilation and vasopressors).^4,12,13 The extent to which these intensive patterns of end-of-life care support the goals and reflect the values and preferences of individual older adults with advanced CKD is uncertain.

Little is known about what matters most to those who care for older adults with advanced CKD. In this article, we use the term caregiver broadly to describe those individuals who have a range of relationships and roles, including paid or formal caregivers, but also family members, friends, colleagues, neighbors, and others who may provide support for an older adult with advanced CKD. In the general population, it is often these individuals rather than the patients themselves, who, as surrogate decision makers, are responsible for most of the critical treatment decisions that arise toward the end of life^14,15 Few studies to date have described the experiences and perspectives of caregivers for patients with advanced CKD. Survey data suggest that despite sizeable differences in end-of-life care practices for patients with end-stage renal disease (ESRD), the quality of care as judged by bereaved family members was remarkably similar to that for patients with other forms of organ failure and frailty, although somewhat worse than for patients with cancer and dementia. Similarities in the quality of end-of-life care between patients with ESRD and those with other forms of organ failure perhaps suggest that the challenges of caring for patients with serious illness as they approach the end of life transcend boundaries between disease processes and care models,⁴ or perhaps, current instruments for assessing quality of end-of-life care fail to fully capture differences in the end-of-life experience of patients with different conditions and those who care for them. More detailed qualitative work will be needed to better understand the end-of-life experience of older adults with advanced CKD and their caregivers. To date, few qualitative studies have addressed this area broadly.¹⁶ Most prior qualitative work among caregivers has been limited to specific treatments or situations where they tend to be most heavily involved such as home dialysis; conservative, nondialytic care; and dialysis discontinuation^4,16–26

To better align the evidence base with the priorities of patients, there is growing interest in engaging patients and their caregivers in all aspects of the research enterprise. A few groups have engaged patients with CKD and their caregivers in setting research goals^19,27–29 and designing research protocols.^30–33 Several key elements of palliative care have been identified as priority areas for research (communication with providers, management of symptoms, and psychosocial impact of kidney failure) in these efforts (Table 1).^19,27–29 The recent international KDIGO (Kidney Disease Improving Global Outcomes) Controversies Conference on Supportive Care in CKD has identified knowledge gaps and set research priorities for palliative care for patients with kidney disease.³⁴ However, this effort did not explicitly involve patients with advanced CKD and their family members, nor did it focus specifically on older adults with advanced CKD. To date, we know relatively little about what elements of palliative care older adults with advanced CKD and their caregivers see as most worthy of study and how research might be most responsive to their concerns and promote better patient-centered outcomes.

Table 1.

Recommendations for Research Priorities for Palliative Care for Older Patients with Advanced Chronic Kidney Disease

Research priority	Study objective	Study setting	Sample	Study design
What matters most to older adults with CKD and caregivers at the end of life?	To describe the end-of-life experience of older adults with advanced CKD and identify opportunities for improvement	Real-world settings, dialysis centers and outpatient CKD clinics	Older adults with advanced CKD; their bereaved caregivers	Longitudinal descriptive studies, either qualitative or quantitative (survey); case–control cohort studies
	To describe the experiences of caregivers of older adults with advanced CKD in engagement in directing care?	Real-world clinical settings, dialysis centers and outpatient CKD clinics	Informal caregivers (e.g., family members, friends) of older adults with advanced CKD	Longitudinal descriptive studies, either qualitative or quantitative (survey); case–control cohort studies
	To understand the research priorities of older adults with advanced kidney disease and their caregivers	Real-world clinical settings, dialysis centers and outpatient CKD clinics	Older adults with advanced kidney disease and their caregivers	Qualitative; quantitative (surveys)
Identifying effective approaches to support older adults and their caregivers during RRT decision making	Develop and test interventions to support patients and caregivers during RRT decision making	Outpatient centers, including the dialysis centers and the primary doctor's office Inpatient care settings	Older adults with advanced CKD with multiple chronic conditions and their caregivers; Older adults with multiple chronic conditions who develop renal failure as a complication	Traditional randomized controlled trials; center-level or provider-level cluster randomized trials; pragmatic trials
Develop effective ACP interventions to improve end-of-life care for older adults and their caregivers	Examine the effects of ACP interventions in outcomes of patients and their caregivers, including care concordant with the patient's preferences and post-bereavement outcomes	Outpatient centers, including dialysis centers and the primary doctor's office	Older adults with advanced CKD with multiple chronic conditions and their caregivers	Traditional randomized controlled trials; center-level or provider-level cluster randomized trials; pragmatic trials; effectiveness implementation hybrid designs
	Examine approaches to implementing efficacious ACP interventions in clinical practice
Reconfiguring the healthcare system	Symptom management strategies	Outpatient clinic and dialysis center	Older adults with advanced CKD and high symptom burden	Traditional RCT of specific pharmacologic or nonpharmacologic interventions
				Cluster RCT at center or provider level of comparing symptom management strategies
	Effectiveness of different strategies for delivering palliative care	Outpatient and inpatient	Older adults with advanced CKD and high symptom burden and/or poor predicted prognosis	RCT of palliative care as add on to usual care or comparing different approaches to delivering palliative care
	Effectiveness of different payment models or pay-for-performance incentives on uptake of palliative care	Outpatient dialysis center	Patients receiving dialysis	Cluster RCT or matched case–control study
	Effectiveness of concurrent hospice and dialysis	Outpatient dialysis center	Patients receiving dialysis with poor predicted prognosis	Cluster RCT or matched case–control study
	Outcomes of comprehensive conservative care	Outpatient	Patients with advanced CKD and poor predicted prognosis	Observational cohort

CKD, chronic kidney disease; RRT, renal replacement therapy; ACP, advance care planning; RCT, randomized controlled trial.

How can the nephrology community best help older adults with advanced CKD and their caregivers navigate complex treatment decisions throughout their illness trajectories?

Choosing dialysis or comprehensive conservative care (hereinafter means medical management of symptoms and signs of advanced kidney disease without dialysis) can be a challenging decision for patients with advanced CKD and those who care for them. While clinical guidelines have been developed to help guide decision making about kidney transplantation or dialysis initiation or withdrawal,^35,36 most are intended to support clinicians rather than patients. Few studies have focused on interventions intended to help patients with advanced CKD make decisions about whether and when to initiate dialysis.^37–40 The lack of decision aids or other types of interventions to guide decisions about dialysis is problematic because dialysis initiation has become increasingly common among older adults over the past decades, despite concerns that dialysis may not restore health or prolong life in older adults with a high burden of comorbidity and functional limitation.^41,42 Although shared decision making has been promoted as an ideal framework for providers to involve patients with CKD and their caregivers in treatment decision making,³⁵ evidence suggests that shared decision making is poorly integrated into the clinical care of patients with CKD, dialysis initiation may be presented to patients more as a necessity than as a choice, and patients and their family members may have little input into these decisions.^10,43 This appears to be especially true for older adults.^44,45

Although more than one in four patients ultimately discontinue dialysis treatments before death,⁴⁶ this possibility is very rarely (<6%) discussed with patients and their families at the time of dialysis initiation or in enough time to consider alternatives such as hospice or dying at home.^47–50 In a study of over 530 patients receiving maintenance dialysis, only 19% indicated that they would want to continue dialysis if they were to become severely cognitively or functionally impaired, and 65% stated that they would prefer to die at home or in hospice rather than in a hospital.⁵¹ Yet a substantial number of dialysis patients die in the hospital.^41,42,46 Although advance care planning (ACP) is a central tenet of caring for patients with a serious illness,³⁵ most dialysis patients report never engaging in ACP discussions with their care providers.^52,53 A recent systematic review of ACP for adults with CKD⁵⁴ indicates that very few studies have tested interventions to enhance ACP or have evaluated the effect of ACP on downstream patient and caregiver outcomes. Despite interest from funding agencies in testing the effectiveness and efficacy of interventions to promote ACP,⁵⁵ there is a very limited repertoire of ACP interventions proven to be efficacious in patients with CKD^56,57 Available data indicate that ACP can be conducted in the dialysis center setting by trained staff or peer mentors and can improve a range of psychosocial outcomes for dialysis patients and their surrogates, including family bereavement outcomes.

Clinical guidelines recommend that providers incorporate prognostic information into the care of older adults with advanced CKD, including shared decision making around the initiation and withdrawal of dialysis. Several studies have validated prognostic scores for predicting mortality in patients receiving dialysis.^58–60 Others have validated prognostic scores for predicting progression to treated ESRD among adults with CKD.^61,62 Three studies utilized prognostic information to identify patients receiving dialysis for an ACP intervention.^57,63,64 To our knowledge, there are no prognostic instruments that have been validated among patients with advanced CKD not yet on dialysis. While the availability of prognostic information is important in supporting shared decision making, there will likely always be some element of uncertainty around estimates from prognostic models when applied to individual patients. More work is therefore needed to understand how to incorporate information uncertainty into prognostic estimates, communicate this information to patients and their families, and integrate this information into the shared decision-making process.⁶⁵

How should the healthcare system be reconfigured to promote patient- and family-centered care for older adults with advanced CKD?

Symptom management is a key priority identified by patients with CKD,²⁷ yet there is limited information about the efficacy of pharmacologic treatments for common symptoms in patients with CKD as most studies have been underpowered and/or did not address global symptom burden. Nonpharmacologic interventions (e.g., mind–body interventions) may be especially appealing for older adults with advanced CKD as polypharmacy is common in this population, but these approaches have been understudied. In addition to limited evidence regarding the efficacy of pharmacologic and nonpharmacologic interventions to treat specific symptoms, it is also unclear how the information provided by symptom assessment tools should be optimally incorporated into clinical practice.

Because patients who receive dialysis spend a large portion of their time at the dialysis center, it is possible that the delivery of palliative care services during dialysis visits could address their unmet needs without adding to patients' travel burden. This approach has been taken for delivering specific elements of palliative care such as ACP or symptom management, although, to our knowledge, there are no reports of a more comprehensive coordinated approach to the delivery of palliative care services within the dialysis center. To integrate palliative care services into the provision of dialysis care, several barriers would need to be addressed. Due to a shortage of palliative care specialists and their uneven geographic distribution,⁶⁶ dialysis professionals (e.g., physicians, nurses, social workers, dieticians, and technicians), would require additional education and resources to be able to deliver high-quality primary palliative care (“primary palliative care”). To facilitate the delivery of primary palliative care in dialysis centers, “best practice” approaches for identifying patients most likely to benefit, engaging patients in ACP in a timely manner, and addressing care needs at end of life need to be defined.⁶ Alternative models for delivering palliative care to patients with ESRD, such as outpatient consultative palliative care and inpatient palliative care, have not been well studied.

Comprehensive conservative care is a viable treatment option for older adults with symptomatic advanced CKD who prefer not to initiate dialysis.³⁴ However, conservative care is rarely offered in the United States unlike other countries, such as United Kingdom and Canada, where conservative care pathways are firmly established.^67,68 Limited data suggest that symptom experiences and quality of life among patients receiving comprehensive conservative care are no worse than those of patients on dialysis. However, these data come exclusively from studies conducted outside where healthcare systems and the cultural context may differ substantially from the United States, and most of these studies had no comparison groups to provide high-quality evidence.⁶⁹

CMS has partnered with dialysis providers to test the effectiveness of a new payment and service delivery model, the Comprehensive ESRD Care (CEC) Model, intended to provide more patient-centered care.⁷⁰ In the current model of care, the ESRD prospective payment system, dialysis centers receive a per-treatment payment, which “bundles” dialysis services, including laboratories, drugs, and equipment related to dialysis care.⁷¹ The CEC Model seeks to create incentives to enhance care coordination and create a person-centered, coordinated care experience, intended to ultimately improve health outcomes.^70,72 The model encourages dialysis centers, nephrologists, and other providers to join together in an ESRD Seamless Care Organization (ESCO), akin to an Accountable Care Organization, eligible to receive shared savings payments and liable for shared losses. An earlier iteration of this model found that rates of advance directive completion could be increased, although the effect on care near the end of life was not examined.⁷³

The ESRD quality incentive program (QIP) is a pay-for-performance initiative in which dialysis centers are incentivized to meet or exceed performance standards established by CMS. Current QIP measures have been criticized because they are disease oriented and often laboratory based.⁷⁴ Two types of metrics are eligible for inclusion in the QIP–reporting measures, which are process measures such as the percent of patients who were referred for transplant evaluation, and clinical measures, which are outcome measures, such as 30-day rehospitalization rates. Proposed patient-centric reporting metrics include the documentation of patient quality of life, patient satisfaction, regular symptom assessments, ACP, medication reconciliation, and measures of care coordination.⁷⁴ At present, no patient-centered clinical outcome measures have been suggested for inclusion in the QIP, in large part, because there is limited evidence to support the effect of interventions on patient-centered outcomes.

While a large number of patients receiving dialysis have limited life expectancy, for Medicare beneficiaries who are receiving dialysis, access to hospice care is largely limited to patients who have a second life-limiting diagnosis (e.g., cancer). For those for whom ESRD is the life-limiting diagnosis, hospice care is usually only accessed after discontinuing dialysis (because the cost of paying for dialysis is prohibitive for most hospices). Consequently, for most patients with ESRD, hospice care is limited to the final few days of life, a time frame generally considered insufficient to optimize end-of-life care.⁷⁵

Outline of Knowledge Gaps

Future research should focus on understanding the values, preferences, and goals of older adults with advanced CKD and the extent to which these are addressed by current practices (Table 2). Specifically, detailed data on the end-of-life experience of older adults with advanced CKD are needed to provide a deeper understanding of observed population-level trends and ultimately identify opportunities to enhance end-of-life care for this population. More information is also needed on the roles, experiences, and perspectives of caregivers for older adults with advanced CKD over the course of illness and on the effectiveness of different approaches to engaging and supporting these caregivers. It is also not known what elements of palliative care older adults with advanced CKD and their caregivers see as most worthy of study and how research might be most responsive to their concerns.

Table 2.

Knowledge Gaps for Palliative Care for Older Patients with Advanced Kidney Disease

Area	Knowledge gap
What matters most to older adults with advanced CKD and those who care for them near the end of life?	1. End-of-life experience of older adults with advanced kidney disease
	2. Roles, experiences, and perspectives of those who care for older adults with advanced kidney disease
	3. Research priorities of older adults with advanced kidney disease and their caregivers
What are the most effective approaches to supporting older adults and their caregivers to navigate complex treatment decisions?	1. Interventions to support older adults and caregivers facing decisions surrounding dialysis initiation.
	2. Tailored shared decision-making approaches to meet the needs of older adults and their caregivers.
	3. The optimal use of prognostic information in the decision-making process.
	4. Advance care planning interventions that facilitate provision of end-of-life care consistent with patients' goals and preferences.
How do we reconfigure the health system to ensure that older adults with advanced CKD receive care that supports their goals and is consistent with their values and preferences?	1. Optimal use of symptom assessment tools
	2. The effect of different payment models and/or pay-for-performance incentives on uptake of palliative care, and effectiveness of different models for delivering palliative care
	3. Measure outcomes of conservative, nondialytic care.
	4. The effectiveness of concurrent dialysis and hospice care in dying patients

With regard to navigating complex treatment decisions, future research should focus on developing and testing interventions to support older adults and their caregivers as they face decisions about whether and when to initiate dialysis, including identifying best approaches to tailoring shared decision making to meet the needs of older adults and their caregivers. The optimal use of prognostic information in the decision-making process, including upstream of dialysis on patient quality of life among patients with less advanced CKD also needs to be determined. In addition, future research is needed to develop and test ACP interventions that align patterns of end-of-life care with patients' goals and preferences, and to determine the best approach to implementing these interventions in clinical practice.

To reconfigure the healthcare system to be more patient and family centered, future research will need to examine how symptom assessment tools should be optimally incorporated into clinical practice. Another research priority is to compare the effectiveness of different models for the delivery of palliative care in dialysis centers and determine the effect of different payment models and/or pay-for-performance incentives on uptake of palliative care. Pragmatic trials are well suited for building the evidence base for these research questions in a timely manner as they can expedite the process of knowledge translation into clinical practice.⁷⁶ Because dialysis may not always benefit older patients with significant comorbidities, there is an urgent need to develop and measure outcomes of conservative, nondialytic care models in the U.S. healthcare system. For older adults on dialysis, a clinical trial or CMS demonstration project evaluating the effectiveness of concurrent dialysis and hospice care would fill a large knowledge gap regarding the optimal management of dying patients receiving dialysis.⁷⁷

Summary of Research Priorities

What matters most to older adults with advanced CKD and their caregivers near the end of life?

Future research should seek to understand the following: (1) the end-of-life experience of older adults with advanced kidney disease and identify opportunities for improvement; (2) the experience of their caregivers and identify opportunities to engage and support them; and (3) research priorities of older adults with advanced kidney disease and their caregivers.

How can the nephrology community best help older adults with advanced CKD and their caregivers navigate complex treatment decisions throughout their illness trajectories?

Future research should also focus on the following: (1) developing and testing interventions to support older adults and their caregivers as they face decisions about whether and when to initiate dialysis, including conservative care for those with symptomatic advanced kidney disease who prefer not to receive dialysis; (2) determining the optimal use of prognostic information in treatment decision making; (3) developing and testing ACP interventions that result in end-of-life care, which is concordant with patients' preferences and improved bereavement outcomes for caregivers; and (4) identifying approaches to facilitate implementation of these interventions in clinical practice.

How should the healthcare system be reconfigured to promote patient- and family-centered care for older adults with advanced CKD?

Future research should focus on the following: (1) how to incorporate symptom assessment tools into the real-world practice of advanced CKD and ESRD patient care, (2) defining expected survival and quality of life for patients who receive comprehensive conservative care, (3) comparing the effectiveness of palliative care integrated with standard care versus standard care alone on quality of life, patient and caregiver satisfaction with care, and healthcare utilization, including different methods for delivering palliative care, and (4) determining the effect of alternative payment models for dialysis care on uptake of palliative care.

Author Disclosure Statement

No competing financial interests exist.