By Leslie P. Wong, MD
Physicians must weigh the prospects for extending life against reduced quality of life.
Consider this scenario: Earl is a 78-year-old man with longstanding hypertension and chronic kidney disease (CKD). You have been following his CKD closely and have noticed steady worsening over time. You have suggested on multiple occasions that he speak with a nephrologist, but he has resisted the idea. He typically comes alone to his appointments, and this has become more challenging for him as his wife has worsening dementia and he is uncomfortable leaving her at home with a caregiver even for short periods of time.
Today, Earl’s labs reveal a glomerular filtration rate (GFR) of 15 mL/min/1.73m2 compared to 25 mL/min/1.73m2 six months ago. You express your concern and again advise him to see a nephrologist to discuss the possibility of dialysis. He replies, “I don’t want to see a kidney doctor right now. I don’t want to think about being on dialysis until absolutely necessary.”
You sigh and ask him to see you again to continue the conversation. Earl protests at having to leave his wife to come to the clinic but agrees to return. You leave the exam room feeling uneasy and uncertain about what to do next.
CKD is associated with serious medical conditions relevant to seniors, such as diabetes, cardiovascular disease, stroke, dementia, and arthritis.1,2 The psychosocial stress of living with chronic disease and lack of knowledge about dialysis frequently make the prospect of impending ESRD overwhelming and confusing for patients and their families.1,2 These factors make discussions about the prognosis of advanced kidney disease and management options complex and uncomfortable.
A recent study showed that even nephrologists specializing in caring for patients with ESRD are reluctant to discuss estimates of life expectancy when they know it is poor.3 This situation is compounded by the finding that ESRD patients may have distorted views about their own outcomes—often more optimistic than their physicians.3 So how should primary care providers approach this conundrum?
First, we should recognize that dialysis is paradoxically both enigmatic and straightforward. Even to trained physicians, the lengthy mathematical equations used to describe dialysis are difficult to comprehend. From the patients’ perspective, there is the foreboding kidney machine that replaces the functions their kidneys once performed. Inconveniences include needles, a rigid treatment schedule, the need for transportation to and from dialysis, and sitting in a chair for several hours.
Of course, these inconveniences are not fully appreciated until after dialysis is initiated. Once dialysis has begun, these issues may consume the patient’s existence with seemingly no alternative except death. Advertisements and websites abound, showcasing only the positive aspects of dialysis. Firsthand accounts show elderly patients with their loved ones relating how rewarding and happy life on dialysis can be. While these images are true for some patients, for others they offer a stark contrast to reality.
I suspect that many primary care providers have never visited a dialysis center. The bitter smell of disinfectant and the cold glow of fluorescent lighting greet patients immediately on entering. Contrary to the bright images in the advertisements, the faces of elderly patients you see in the waiting room or settled in hallway chairs are tired and unanimated. Wheelchairs line the walls—some empty, some containing figures hunched over and asleep.
In the treatment area, many patients are sleeping, some with blankets pulled over their faces. Amid the sound of alarms and blood pumps churning with factorylike monotony, outstretched arms connected to the dialysis machinery provide the only clues that human beings are hidden beneath. Many patients leave exhausted and drained after completing their treatments, returning home to lie in bed and recover.
Scenes like this are commonplace across the United States and illustrate that dialysis is no panacea for kidney failure. For elderly patients with ESRD, the stakes of dialysis are high: the choice between life and death. There are reduced prospects for renal transplantation for elderly patients compared with younger, healthier patients. The key decision focuses on whether or not to initiate dialysis in an older patient. While health care providers understand the importance of this decision, we avoid this awkward and emotionally packed discussion when it is most needed—before dialysis ever begins and perhaps even before a patient is referred to a nephrologist.
While there is universal agreement that providing adequate pre-ESRD education is the sine qua non for optimal dialysis initiation, the goals of this education may not always be appropriate or relevant to the elderly population’s care and needs. Traditionally, CKD education has concentrated on dialysis modality choice, vascular access planning, and kidney transplant options.2 Home dialysis, particularly peritoneal dialysis, can be well suited for geriatric patients and their families.1,2
Although necessary and useful, the focus on these traditional areas may neglect the deeper, more fundamental needs affecting the care of older ESRD patients. The central issue hinges on addressing not what could be done but rather what should be done.
There is growing awareness that many elderly patients initiate dialysis without adequate consideration of their individual prognosis, life goals, and nondialysis options.4 As mentioned earlier, these are difficult topics to broach with patients and their families, and they’re challenging to navigate even for the most experienced nephrologists.1,4 Adjusted mortality rates for dialysis patients over the age of 65 are considerably higher than for the general population without ESRD and even higher than similarly aged cancer patients.1 Nursing home residents in particular have extremely high mortality in the first year of dialysis—nearly 60%.5
Despite the known poor survival in the elderly dialysis population, advanced care planning and open discussions about prognosis are often inadequate.4 In some centers, fewer than 10% of patients start dialysis with an advance directive and a health care proxy in place.4 Lack of attention to this most basic requirement is multifactorial, as systems-, physician-, and patient-related factors all contribute to inappropriate dialysis initiation for many elderly patients.4
Furthermore, there rarely is a discussion about the option of hospice care without dialysis or withdrawal from dialysis once it is initiated. Much of the apparent hesitancy to address end-of-life issues arises from physician discomfort in discussing these topics, which may stem from inadequate training or fear of legal issues around withholding or discontinuing dialysis.4 In addition, patients may lack the decision-making capacity to fully comprehend the scope of their prognosis and voice their preferences.6 This clouded communication confounds attempts to transition patients smoothly to dialysis and coordinate proper care between providers.4
Frailty, falls, the inability to perform activities of daily living, and cognitive decline all may occur or worsen in elderly ESRD patients.2 Data from a US registry of nursing home residents showed that only 13% of patients maintained the same level of functional status one year after starting dialysis.5 The resultant decline in overall health elderly dialysis patients can experience may reduce the value of prolonging life with dialysis, particularly if doing so entails considerable physical and psychological suffering.
A striking finding to support this notion was demonstrated in a study of Canadian patients starting dialysis.6 More than 60% of prevalent dialysis patients regretted the decision to ever start dialysis.6 In the same study, only 34% of patients reported that they were continuing dialysis because of their own personal wishes; fewer than 10% reported talking with their nephrologists in the past year about these end-of-life issues.6
So if neither nephrologists nor patients can articulate concerns about quality of life on dialysis, how can we ensure that appropriate interventions occur before and after the initiation of dialysis?
The physical decline experienced by more than 95% of geriatric dialysis patients is further complicated by a high prevalence of depression and functional dependence on others. This constellation of conditions may lead to maladaptive psychosocial behavior, such as withdrawal from social activities or exercise. The resultant loss of strength and muscle mass from decreased physical activity further perpetuates physical and psychological deterioration. These factors increase risk for subsequent hospitalization, institutionalization, and death in a hospital setting.7
Lack of understanding of this pernicious cascade of events following dialysis initiation may result in missed opportunities for early intervention to prevent or mitigate functional or cognitive disability.7 Targeted evaluation by physical and occupational therapists specializing in geriatric rehabilitation may help identify those patients most vulnerable to decline and allow corrective measures to be initiated earlier. Unfortunately, awareness of these issues is low among health care providers, thus limiting coordination of care.
Engaging primary care providers earlier in the continuum of CKD care to help coordinate proper assessment and counseling for patients approaching ESRD may provide one promising remedy. While some may raise the issue of the blurring of responsibilities between the nephrologist and primary care provider, a more collaborative approach would reinforce the process of communication required to ensure shared decision making about dialysis initiation or conservative nondialytic therapy.
Guidelines have been published detailing the approach and considerations required to establish a shared decision-making relationship with elderly ESRD patients.8 These guidelines also explain the important role of palliative care in the armamentarium of interventions to assist the geriatric ESRD population.8 Indeed, the relatively recent concept of palliative care in ESRD has transformed thinking in terms of dialysis by default to palliative care along the continuum of kidney failure, whether or not dialysis is chosen.2,8 This has culminated with the development of an approach called maximum conservative management as a more desirable choice for some elderly ESRD patients than dialysis.2,8
Maximum conservative management takes a multidisciplinary approach, targeting the physical and psychological needs of patients and their families. It involves active intervention focusing primarily on alleviating and minimizing physical discomfort and worry in older individuals with progressive kidney failure. Implicit is the recognition of impending death and coordination of care to foster the appropriate transition to hospice care when indicated. This requires special involvement from dietitians, social workers, and other nonphysician team members.8
While this approach has been used in Europe for some time, it is a relatively new concept in the United States. The advantages for some patients and their loved ones, given the challenges faced by many geriatric dialysis patients described earlier, could be substantial. While survival is prolonged on dialysis, with an average two-year survival rate of 76% with dialysis compared with 47% with maximum conservative management, geriatric dialysis patients are much more likely to be hospitalized and die in the hospital.2 Conversely, patients with maximum conservative management are much more likely to avoid hospitalization, receive hospice services, and die at home in the company of their loved ones.2 By working more closely with nephrologists and helping to initiate discussions with their geriatric CKD patients about life goals and expectations, primary care providers can help ensure that appropriate assessment occurs early in the process.
Ironically, with all of the provider uneasiness surrounding the decision to withhold dialysis in elderly patients, most of these patients die from comorbid conditions, not uremia.2 Symptoms of uremia include confusion, nausea, thirst, dyspnea, loss of appetite, and myoclonus. These can be controlled with opioids, and guidelines for pain management in ESRD can help alleviate the suffering as death nears.2,8
Commitment to conservative treatment also can obviate potentially unnecessary procedures, such as vascular access surgery, which may incur risk but little benefit for elderly patients with a poor prognosis.9 Similarly, while some elderly ESRD patients benefit remarkably from kidney transplantation, the majority of geriatric dialysis patients will not have access to a living donor, and many will die on the waiting list for these scarce organs.
Tools exist that may help evaluate elderly patients with respect to their wishes and likely outcomes on dialysis.8 Simple measures, for example, such as asking nurses “Would you be surprised if this patient died in the next year?” have been shown to be remarkably predictive of patient prognosis on dialysis and may help open discussions with patients about conservative management.1-3,6,8
While this article in no way suggests that elderly patients should not be offered the full range of treatment options, it is clear that this patient population suffers from lack of adequate education and that their health care providers are committing them to a pathway from which they may not always benefit. Doing more is simply not always better, and doing less doesn’t necessarily mean less benefit.
One underlying myth that must be dispelled is that telling elderly patients about their poor prognosis on dialysis will somehow cause them to lose hope.3,8 The evidence appears to be quite the opposite, with many patients never being afforded the opportunity to weigh the decision together with their providers.6 While many older patients starting dialysis thrive on treatment, for others the benefits are ephemeral and consequences are later regretted.6 Primary care providers’ better understanding of these issues is invaluable and could facilitate better communication with patients and their families faced with progressive CKD. Nephrologists and geriatric specialists should work together to ensure advocacy for the special needs of elderly individuals with ESRD. Ultimately, patients must be central in this process. With compassionate guidance and support, we can help them determine for themselves whether or not dialysis is an appropriate choice.
— Leslie P. Wong, MD, is vice president of clinical affairs at Satellite Healthcare in San Jose, California, and an adjunct clinical assistant professor of medicine at Stanford University.
Frailty Test Predicts Death, Hospitalization
In a study described in the Journal of the American Geriatrics Society, the Johns Hopkins investigators found that dialysis patients deemed frail by the simple assessment were more than twice as likely to die within three years of starting dialysis and much more likely to be hospitalized repeatedly.
Results of the frailty test, which measures physiological reserve, suggest that kidney failure patients who submit to the long and arduous process of mechanical blood cleansing several days per week undergo a premature aging process detrimental to their health, according to the researchers.
“More than 600,000 people are on dialysis, and they have a wide range of mortality and hospitalization risks,” says study leader Dorry L. Segev, MD, PhD, a transplant surgeon and the director of clinical research for transplant surgery at Johns Hopkins and an associate professor of surgery at the Johns Hopkins University School of Medicine. “But we’re not very good at predicting who is at more—or less—risk for hospitalization and death. This assessment tool gives us much better insights into which dialysis patients are at greater risk so that their treatment can be tailored to minimize complications, hospitalizations, or death.”
Dialysis machines do much of the work of damaged kidneys, cleansing the blood of waste and excess water. Dialysis cannot, however, fully compensate for the blood pressure and fluid control roles the kidneys play, and the body can weaken as it tries to make up for what is missing, Segev says. The only cure for kidney failure is a kidney transplant.
In the study, researchers measured frailty using a five-point scale developed at Johns Hopkins. Patients are classified as frail if they meet three or more of the following criteria: shrinking (unintentional weight loss of 10 or more pounds in the previous year), weakness (decreased grip strength as measured by a handheld dynamometer), exhaustion (measured by responses to questions about effort and motivation), reduced physical activity (determined by asking about leisure time and activities), and slowed walking speed (the time it takes to walk 15 feet).
Segev and his team enrolled 146 hemodialysis patients between January 2009 and March 2010 and followed them through August 2012. At enrollment, 50% of the participants who were aged 65 and older and 35% of those under the age of 65 were measured as frail. The three-year mortality rate for frail participants was 40% compared with 16.2% for the nonfrail. Of those hospitalized more than twice over the study period, 43% were frail, while only 28% were nonfrail.
Segev says physicians who are aware of their patients’ frailty may choose to examine those patients more frequently, adjust dialysis to a more conservative protocol, or make sure patients have the social support necessary to ensure they are taking their medications and otherwise taking care of themselves.
— Source: Johns Hopkins Medicine
2. Berger JR, Hedayati SS. Renal replacement therapy in the elderly population. Clin J Am Soc Nephrol. 2012;7(6):1039-1046.
3. Wachterman MW, Marcantonio ER, Davis RB, et al. Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists. JAMA Intern Med. 2013;173(13):1206-1214.
4. Steinman TI. The older patient with end-stage renal disease: is chronic dialysis the best option? Semin Dial. 2012;25(6):602-605.
5. Kurella Tamura M, Covinsky KE, Chertow GM, Yaffe K, Landefeld CS, McCulloch CE. Functional status of elderly adults before and after initiation of dialysis. N Engl J Med. 2009;361(16):1539-1547.
6. Davison SN. End-of-life preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5(2):195-204.
7. Farragher J, Jassal SV. Rehabilitation of the geriatric dialysis patient. Semin Dial. 2012;25(6):639-656.
8. Renal Physicians Association. Shared Decision-Making in the Appropriate Initiation and Withdrawal From Dialysis. 2nd ed. Rockville, MD: Renal Physicians Association; 2010.
9. Chan MR, Sanchez RJ, Young HN, Yevzlin AS. Vascular access outcomes in the elderly hemodialysis population: a USRDS study. Semin Dial. 2007;20(6):606-610.