Abstract
Dear Editor:
The technological imperative suggests that any new technology that is introduced must be accepted and even embraced, with little reflection on its impact. Hemodialysis (HD) and end-stage renal disease (ESRD) provide an interesting paradigm for exploring the tension that often exists with practicing evidence-based medicine, using technology, and appreciating cost in the health care system. This is particularly important in light of a recent surge of dialysis-related literature that may leave patients and clinicians confused about which recommendations to make.
Questions of rationing and funding for HD have put it in the ethical spotlight since it was originally developed in the 1940s, when it was a scarce resource. Shana Alexander's 1962 Life magazine exposé has special historical significance, as it explored the ethical and moral distress associated with determining who should receive this limited resource. 1 To improve access to HD and remove moral distress regarding rationing, Congress amended the Social Security Act in 1972 to cover treatment of patients with ESRD, making a distinct commitment to patients with ESRD. Since these efforts, HD technology has become more readily available and affordable, and dialysis for patients with ESRD has been routine. Most patients in the United States with ESRD will be offered hemodialysis if they wish to receive it. Several factors are considered when a person opts to receive HD, including age, socioeconomic status, and cultural and religious norms. As articulated by Kaufman regarding technology in general, the use of HD for ESRD is viewed as the norm, or standard of care for patients in the United States.2,3 Practitioners in other countries may view this differently.
In our modern, consumer-driven health care model that often focuses on autonomy as the “primary” principle, there is often a desire to offer patients life-sustaining treatments, as quantity of life (survival) may be of premium value. It is more difficult to predict which patients might have improved quality of life, and furthermore, what the price is of quality relative to the needs of others in a health care system. Unfortunately, available guidelines and investigations often confuse clinicians and patients, as practice styles are variable regardless of available evidence.
A 1998 survey noted that US nephrologists are more likely to offer HD to patients with dementia and complicated, advanced diabetes, and are more likely to consider patient/family wishes or fear of lawsuit as a reason for offering treatment. US nephrologists are less likely,however, to consider quality of life in clinical decision making. 4 Limited financial resources were reported by UK and Canadian nephrologists more so than by US nephrologists. 4 Indeed, increasing HD-associated costs, particularly for patients 70 years of age and older, has been reported in the United Kingdom. 5
One factor reported in the 1998 study 4 was whether the patient was going to survive at least 2 years after starting dialysis. Reasonable plausibility of 2-year survival was a valuable consideration for nephrologists in Canada and the United Kingdom to even consider offering patients HD; however, HD is frequently offered to US patients, even at life's end, and contributes in part to the 25% of Medicare expenditures occurring during the last 12 months of life. 6 A rationale for this may be the desire of patients/families for HD and a focus on quantity over quality of life. Recent studies have been conflicted on this question.
A 2009 study noted that US patients with ESRD who were nursing-home residents and began HD were noted to have a concurrent, “substantial and sustained decline in functional status.” 7 Fatigue is often associated with participation in HD. Patients usually undergo HD three times weekly, and common symptoms on the treatment day include fatigue, drowsiness, and sometimes “boredom” (as directly reported by some patients; personal communication). The equivalent of 48 hours of renal physiology is performed in a 3- to 4-hour period and patients may experience significant fluid and electrolyte shifts. These shifts may lead to the remainder of the day being marked by ongoing fatigue that ranges to sheer exhaustion. Many patients report acceptable quality of life on non-HD days, but the cycle repeats itself the following day (personal communication). This study reports a 58% mortality rate at 12 months, 7 suggesting that many of these US patients might not have even been offered HD under Canadian or UK guidelines.
Other studies have recently looked at the efficacy of HD and note that patients who have a 48-hour interval between HD treatments are more likely to have adverse events. 8 In essence, the question becomes: Is dialysis three times per week not enough, and should every other day or more frequent dialysis be considered?
The findings of these studies seem to juxtapose an important consideration at the heart of this debate: should we be doing more HD on more patients, or less HD overall? This question is of particular interest when we consider our current health care debate and consider how we should allocate resources in a responsible fashion, but also in a way that is consistent with a patient's autonomy. Clinicians are often uneasy about discussions like these, not only because of the financial issues, but because of the difficulty in determining what acceptable quality of life for a patient is. What one patient sees as a valuable existence (doing more HD to improve survival benefit) may be opposed by another's view that the burden is already excessive and to add on more is unthinkable. A recent study, published almost concurrently with the Foley study, 8 suggests that 42% of US primary care physicians believe that their patients receive too much care. 9 Clinicians cite reasons such as concerns over malpractice, clinical performance metrics, and financial incentives that encourage aggressive practice. 9 Furthermore, this is on the heels of a decision by the Centers for Medicare and Medicaid Services to bundle expenses related to HD, which will lead to more careful consideration of care options, and a genuine avoidance of unnecessary expenditures against a bundled reimbursement rate.
With all of this, what can palliative medicine clinicians do to potentially bridge the gap? Pellegrino has suggested that a loss in emphasis on teaching clinicians how to make clinical recommendations has paralleled a focus on the “absolutization of autonomy” (personal communication, Edinboro University, June 2010). 10 This is one area in which physicians can make an impact on the overall health care system by consistently making recommendations on potential benefits, burdens, and efficacy of treatment. Germain and colleagues 11 bring this issue to the forefront, calling on nephrologists who order dialysis to be accountable for assessing the goals of care and advance care planning, and recognizing “when enough is enough.” Clinical guidelines support shared decision-making for patients and clinicians regarding the “appropriate initiation of and withdrawal from dialysis.” 12
Finally, Pellegrino has asserted that efficacy is the only domain where physicians can truly comment, as the benefits and burdens of a life-sustaining treatment are in the purview of the patient. 13 Such benefits and burdens may extend beyond the patient to include his or her family, or even the community. Thus, if quality-of-life issues are discussed from the patient's perspective and patients are given the chance to ask for opinions from their health care clinicians, this may impact patient or surrogate decision making. Ultimately, some patients may opt for treatments that have a greater emphasis on quantity rather than quality of life, but to accept this as a norm resulting from the technological imperative appears unreasonable. Palliative care clinicians are well poised to bridge the current evidence available to guide practice and to go beyond the evidence to frame options within the goals of an individual patient and are likely to be called upon to do this increasingly in the foreseeable future.