Summary
As the fastest growing sector of the incident ESRD population, older patients constitute a group for which renal replacement therapy has special implications. Older CKD patients have unique needs by virtue of advanced age, high prevalence of comorbid conditions, slower progression of renal disease, and reduced survival. Burdens and risks attendant to dialysis may be amplified in the older patient and patients with impaired functional status or comorbid conditions, and therefore, dialysis may confer little to no survival benefit. Rates of dialysis withdrawal are highest among the oldest patients, raising the possibility that the standard content of informed consent for dialysis warrants an age-sensitive approach that is attuned to the very different balance of pros and cons of dialysis for older patients with multiple comorbidities and younger patients with limited comorbidity. Informed consent for older patients should include presentation of risks, benefits, and burdens associated with dialysis, age-specific estimates of prognosis with and without dialysis, and potential for loss of independence and decline in functional status with initiation of dialysis. In this article, medical evidence and clinical practice guidelines relevant to advance care planning for the older patient with CKD are reviewed, issues to consider in the dialogue with older patients contemplating dialysis are presented, and recommendations for an age-attuned approach to informed consent for older CKD patients are made.
Introduction
An estimated 47% of individuals >70 years of age carry the diagnosis of CKD, and the prevalence in those individuals >80 years of age is even higher (1). The proportion of patients >65 years of age starting dialysis has increased by nearly 10% annually, representing an overall increase of 57% between 1996 and 2003 (2,3). The fastest growing segment of the incident ESRD population (3), elderly patients (defined as individuals >75 years old), have a high prevalence of comorbid conditions (4), with a constellation of risk factors that often overlaps with CKD. Despite notable differences in pathophysiology and the natural history of CKD in older versus younger individuals, clinical guidelines and recommendations are rarely age-specific (5) and do not address issues in the context of the older patient. Traditionally, options for much of medical care have been relegated to a one size fits all approach, although recognition that elderly patients have different needs, values, and perspectives on survival is increasingly apparent. For patients with CKD, the effects of age on progression of renal disease and survival to dialysis are sufficiently profound to prompt the recommendation that nephrologists avoid an age-neutral approach when considering the propriety of dialysis in elders (6). Research over the last decade on end of life care has added greatly to the armamentarium of tools available (Tables 1 and 2) to help nephrologists objectively counsel older patients with CKD (7), although the majority of literature does not focus on the propriety of initiating dialysis but its discontinuation.
Web resources for advance care planning at the end of life
Tools available in the Renal Physicians Association Guideline for Shared Decision Making
With the passage of legislation that assured coverage for dialysis in 1972, responsibility for determining which patients are appropriate for dialysis was delegated to nephrologists, whose ethical responsibility to “first do no harm” is ever challenged by technological and medical advances. Furthermore, as effectiveness and low risk of new procedures such as renal replacement therapy (RRT) promote their incorporation into standard practice, choice is effectively eliminated, fostering what has been referred to as the biomedicalization of death in the elderly (8). Indeed, many older and sicker patients starting dialysis today would have been ineligible before enactment of this legislation, a stark contrast to the current climate where technical success and widespread availability of RRT has blurred the distinction between opportunity to extend life and obligation to do so. The decision to start dialysis is a personal one that is directed by one’s medical condition and motivated by desire to continue or prolong life and by willingness to accept the risks and burdens inherent to this life-sustaining procedure. Reports that many patients regret their decision to start dialysis (9) underscore the importance of advance care planning (ACP) and suggest a need to evaluate processes by which our patients are informed and ultimately, consent to dialysis. In this paper, medical evidence and clinical practices relevant to ACP for the elderly CKD patient are reviewed, and issues that merit consideration in the dialogue with those individuals contemplating dialysis are presented.
Impact of Age, Functional Status, Comorbid Medical Conditions, and Dialysis on Survival
The trajectory of illness is variable and unique to CKD, and neither renal failure nor its sequelae is predictably the terminal or even sentinel event. For patients on dialysis, the presence of comorbid conditions is the single most predictive factor of outcome and is additive with age in predicting survival (10–14). Average first year mortality for dialysis patients over the age of 65 years is 46%, with those individuals older than 85 years having 22% greater likelihood of death in the first year (2) and a median survival of 11.6 months compared with 24.9 months for individuals between 66 and 79 years. A high prevalence of frailty has been noted among older patients on dialysis (15), and it is associated with a threefold higher risk of death, supporting a primary role for frailty as a predictor of outcome. Marked functional impairment, a history of falls, and the inability to transfer are other indicators of poor prognosis (16,17) along with hypoalbuminemia, a strong predictor for mortality in patients on dialysis (13,18–20).
Several methods of predicting outcomes in CKD have recently been advanced. A clinical score using nine comorbid conditions to predict 6-month prognosis in patients over 75 years starting dialysis found that individuals with the highest scores had the highest mortality, with rates as high as 70% (21). The surprise question, “Would I be surprised if this patient died in the next 12 months?,” has been recognized as a simple and reliable method of identifying sicker incident dialysis patients with high risk for early death (22). Cohen et al. found five variables to be independently associated with early mortality: older age, dementia, hypoalbuminemia, diagnosis of peripheral vascular occlusive disease, and negative response to the surprise question were used to develop an integrated 6-month prognostic tool that was validated for the prevalent hemodialysis population (23). Among octogenarians offered dialysis, predictors of death within 1 year included poor nutritional status, functional dependency, and late referral (24).
Finally, a growing amount of literature suggests that, for patients with a poor prognosis, RRT may not confer a significant survival benefit or prevent significant functional deterioration during the first year on dialysis (10–14). For patients over 75 years with characteristics suggesting a poor prognosis (Table 3), studies comparing dialysis with active medical management without dialysis do not uniformly show benefit to survival with dialysis (7,10–14), and the survival advantage, when present, may come with substantial burdens that negatively affect quality of life.
Characteristics signifying a poor prognosis in older patients
Likelihood of Renal Disease Progression before Death
Older patients lose renal function at slower rates than their younger counterparts, have a low incidence of progression to ESRD, and have shorter survival (6,24–29). Many older CKD patients die long before reaching dialysis because of significant cardiovascular mortality with higher stages of CKD (6,24–29). Older adults were 13 times more likely to die of any cause than progress to ESRD and six times more likely to die of cardiovascular disease than develop ESRD (27). The decline in renal function was slowest in CKD stage 4 patients over 75 years of age, and the higher the age, the lower the likelihood of living long enough to require dialysis (26). Irrespective of baseline renal function, patients over 85 years of age were more likely to die before progressing to the need for dialysis (6), and 30% of octogenarians followed over 4 years died of nonrenal causes before RRT (28). More than one-third of patients over 80 years of age were found to have stable nonprogressive CKD, which was predicted by low levels of proteinuria, lack of hypertension, and low cardiovascular comorbidity (29). Thus, many older patients as well as those patients without deteriorating renal function or proteinuria may not progress to ESRD and the need for RRT.
Burdens of Dialysis and Risk to Quality of Life
For most patients considering RRT, the impact of dialysis on day to day life may be difficult to envision. The symptom burden in patients with ESRD is high, and along with increased comorbidity, it is linked to reduced quality of life and depression (30,31), also common in ESRD (21). In addition to the occurrence of adverse physical symptoms while on dialysis, many patients experience multiple interdialytic symptoms, the aggregate of which can cause difficulty with activities of daily living (31). Furthermore, patients living distant to a dialysis unit must add the time and expense of traveling to and from dialysis, the long hours spent on dialysis, and a reduction in the time available for other activities (11–14).
The burdens of dialysis also include surgery for vascular or peritoneal access placement and their potential surgical complications. Primary maturation failure of the arteriovenous fistula (AVF) is reported to be as high as 60%, with the highest rates observed in older patients, females, nonwhites, and individuals with cardiovascular disease (32,33). An important prerequisite for achievement of a successful AVF is the presence of suitable vascular anatomy, the likelihood of which decreases with age and presence of many conditions common to patients with ESRD (32–35). Requiring all patients with advanced CKD, irrespective of age, to undergo AVF placement may be for naught in those individuals who are unlikely to live long enough to need their AVF for RRT. Faced with the possibility for little to no survival advantage with dialysis, older patients may be less accepting of such required clinical practices as well as the inter- and intradialytic symptoms that commonly accompany dialysis.
Clinically Meaningful Outcomes Are Relative
Dialysis can sustain life, but for patients suffering many of its indignities, dialysis may be viewed as merely a forestalling of death. Such a “clinically sustained existence,” as characterized by Kaufman et al. (8), fosters a sense of prolongation without progress—a place somewhere between getting neither better nor worse. This dilemma highlights the need for emphasis on clinically meaningful outcomes, the focus of which may be quality of life rather than quantity of survival.
Although the effects of initiating dialysis on patient status will vary between patients, current research suggests that functional status in older individuals is likely to decline rather than improve (16,36). The anticipation that chronic comorbid conditions will require hospitalization and the desire to die at home (or fear of dying while hospitalized) may be important considerations (9). Patients choosing dialysis over maximum conservative management survived three times as long but had higher hospitalization rates and were less likely to die at home (11); 1- and 5-year survival rates of veterans >75 years of age on dialysis were 53% and 2.4%, respectively, although approximately 20% of time was spent hospitalized (37). Comorbidity did not independently predict mortality, and survival on dialysis was not significantly different from survival of patients choosing not to pursue dialysis; however, significantly more patients choosing dialysis died while in the hospital (65%) than individuals who chose the nondialytic course (10). Disability and functional loss requiring caregiver or nursing home support were reported in more than 30% of octogenarians within 6 months of initiation of dialysis (36). For older patients suffering the loss of independence and other indignities of advancing age, meaningful components of the informed consent process may include symptom management, dying at home, and avoidance of hospitalization rather than duration of survival.
Informing Prospective Dialysis Patients about the Contingencies of Their Consent
The initiation of dialysis presumes the appropriate provision of informed consent (Table 4). Ideally, the process of informed consent begins as part of ACP long before a patient is faced with a decision about RRT. The importance of ACP is underscored by the high rates of withdrawal from dialysis (7), which is second only to cardiovascular disease as a cause of death and accounts for one-quarter of dialysis patient deaths (3).
American Medical Association definition of informed consent
The complexities of ACP for patients with kidney disease are of formidable magnitude (9) and confounded by preferences about dialysis that may change over time (38). Elderly patients evaluated before treatment for depression were rarely interested in dialysis as a life-sustaining therapy when depressed; after treatment, patients showed increased desire to pursue a variety of life-sustaining therapies subsequent to improvement in their depression (39). Factors influencing an older patient’s decision to start dialysis may be heavily weighted on functional status, the cognitive ability to appreciate quality of life, or even the perception (right or wrong) of the dying experience should they choose to forego dialysis. Low levels of cognitive function are highly prevalent in older patients with CKD (40); thus, many older patients may be less able to comprehend the magnitude of their disease, let alone the trappings associated with the day to day experiences of dialysis. Among elderly hemodialysis patients interviewed to determine whether informed consent for performing dialysis had been obtained, most of the patients lacked sufficient understanding and knowledge of their circumstances (41). Patients often do not understand the options (or the options presented may not include the option to forego dialysis), and many feel as if they have no choice (8). In situations of medical emergency, the presumed certainty of death is likely to trump any risk to benefit considerations that, under elective circumstances, might result in a different decision. Ironically, patients rarely include dialysis in the category of life support (9), although some view the act of refusing a life-sustaining treatment (as opposed to foregoing a treatment that may or may not prolong life) as ethically or morally wrong. Most patients wish to receive detailed information about their condition to be prepared and plan ahead in case of death (9), and the vast majority desire information about their life expectancy and prognosis, whether positive or negative (42). A high percentage of patients, however, have not had these discussions with their nephrologists (43).
The increasing numbers of older patients starting dialysis, coupled with the persistently high withdrawal rates, might be thought to reflect a passive acceptance on the part of the patient, a lack of good judgment on the part of the physician, or both. Some patients with good cognitive function choose death over dialysis (44), citing satisfaction with the totality and finality of their life. An estimated 5–7% of patients with advanced CKD chose to forego dialysis or were not offered dialysis by their nephrologists (45). Significantly more patients with advanced CKD were not referred for dialysis at all by primary care physicians (22%), who cited age as the primary reason for withholding treatment (60%) (45). By contrast, principle factors influencing the decision to not offer dialysis to octogenarians included late referral, social isolation, and poor functional status (24). The lack of data on frequency of withholding dialysis notwithstanding, patients making the informed choice to forego RRT and opt for medical management deserve a clear treatment plan with timely arrangements for active medical treatment during the end of life.
Informed Consent for the Dialysis Procedure Is Not Enough
Nephrologists’ ability to predict outcomes has been significantly enhanced with the available predictive tools and evidence-based guidelines that can be used when counseling older patients about the burdens, risks, and benefits of dialysis (7) (Tables 1 and 2). Prognosis of the individual patient is ultimately uncertain, however, and the ability to predetermine which patients will most likely benefit from dialysis remains a challenge and an area of needed research (17,46). This prognostic ambiguity should not limit but rather, encourage open discussions of the implications of either choice and as Swidler further advocates, communication processes should address and update goals of care as the effect of dialysis on a patient’s status becomes apparent: the “trajectory of decline progresses and end of life issues become more prominent” (47). When contemplating the propriety of dialysis, patients and nephrologists alike must anticipate and adapt to changes in patient status to assure an informed consent process that is individualized and dynamic. Unique aspects of ACP for patients with CKD include, in addition to the availability of replacement therapy for the failing organ, the opportunity to accept or refuse its implementation, a choice that is increasingly invoked (3). The finding that patients with nephrology care before starting dialysis had 50% lower risk of death because of withdrawal and cardiovascular disease in the first 120 days of dialysis (48) suggests a benefit of proactive discussion between patient and nephrologist. Specific issues to address include estimates of survival, impact of dialysis on daily life, projections of change in functional status, and alternatives of nondialytic management of progressive CKD (Tables 5 and 6). When medical management is chosen in lieu of dialysis, ACP discussions that outline the activity of CKD treatment and the implementation of patients’ goals are recommended (7).
Specific issues to address in informed consent discussions with older CKD patients
Recommendations for providing informed consent to elderly patients contemplating dialysis
Discussion and Recommendations
Older patients (>75 years) with stage 4 or 5 CKD constitute a group for whom the dialogue of informed consent for initiation of dialysis has special implications. In patients advancing to dialysis, older age, functional status, and presence of comorbid conditions are important predictors of survival, and the likelihood of death before dialysis is formidable. Burdens inherent to dialysis affect patients uniquely and may constitute morbidity that is unacceptable to some individuals.
Estimates that care of the elderly will constitute at least 50% of patient encounters, coupled with the medical and socioeconomic complexities involved with elder care, highlight the need for knowledge of geriatric guidelines and training in this discipline (46). A systematic approach to ACP for patients nearing ESRD and the integration of shared decision making into medical care is espoused in the recent Renal Physicians Association guideline (7). Initiation of ACP early on in the continuum of CKD offers patients and providers time for reflection and allows for a setting in which information is likely to be best received (49). Proactive discussion of patients’ values and desires as they approach the end of life may preclude the need for hurried uninformed decisions, initiation of dialysis under emergent conditions, and passive acceptance of dialysis thereafter.
Sufficient evidence and ethical policy statements exist to support active medical management without dialysis, when “appropriate” or “reasonable,” in certain patients with a poor prognosis (Table 3) and command a shift in focus from one of survival to one of maintaining quality of life. In such patients, the option to forego dialysis along with plans for CKD care management should be presented with objective enthusiasm on the part of the nephrologist. In patients for whom the prognosis is unclear, a time-limited trial of dialysis is an additional option. Issues to address and recommendations to consider in the informed consent process for older patients are presented in Tables 5 and 6.
The provision of informed consent for dialysis is more than a procedural document needed to legally initiate the dialysis treatment. Its importance as part of proactive ACP and the consequences of its engagement are magnified in older patients whose prognoses and life experiences will color decisions relevant to sustaining quality and quantity of life. Nephrologists are uniquely responsible for assuring the integrity of this process and its tailoring to the needs of the older patient. As their numbers expand, medical advancements continue, and new research sheds light on outcomes, the process by which we inform our elders and ultimately, accept their consent or refusal for dialysis will continue to command our respect and attention.
Disclosures
None.
Acknowledgments
The author gratefully acknowledges Dr. Alvin “Woody” Moss for his insight, direction, and support in the preparation of this manuscript.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
- Copyright © 2012 by the American Society of Nephrology