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Autonomy, futility, and good business in reproductive medicine: is the slope getting more slippery?
INKLINGS Autonomy, futility, and good business in reproductive medicine: is the slope getting more slippery? ‘‘I've thought about this a lot, and I think I'm stuck’’ (Anonymous) As I interact with colleagues across the country I come away more and more impressed that our clinical, intellectual, scientific, and sometimes even humanitarian values are being consistently assaulted, if not frankly overwhelmed, by the business pressures of the ‘‘fertility marketplace.’’ I do remain gratified by frequent discussions among practitioners about how we might improve our clinical outcomes, but at the same time I am struck that these discussions seem to focus far too often on how the improvements in one practice or another could be leveraged to become an advantage in the competitive marketplace rather than shared with others to benefit all of our patients. Although I am certainly not so naïve as to ignore national, and even international business trends—indeed the global world of infertility care is becoming ever flatter—I see this development being manifest on almost a daily basis in how we counsel and provide care to those patients and couples whose chance of a successful pregnancy with even the most aggressive treatment can only be considered futile. Hence, the basis of my feeling stuck. Those of us who have been treating infertility and performing (what is now called) assisted reproductive technology (ART) for 30 or so years recall the days when the capacity to accommodate all of the patients who might profit from IVF (or its related cousins of the time) was quite limited. There were few IVF programs, and patients with a very poor prognosis were often turned away in favor of those who were more likely to become pregnant with treatment. We as practitioners typically felt uncomfortable about these decisions, but the reality was that it was most sensible to allocate a limited resource (i.e., ART) to maximize clinical benefit. This strategy of directing care to those patients with the best prognosis, repeated in turn with many new technologies, such as donor oocytes and intracytoplasmic sperm injection (ICSI), was largely, if not completely, unrelated to business considerations. It is predictable that the number and types of patients to whom ART is now offered parallels the dramatic expansion of IVF centers, from a handful in 1982 to what is now close to 500 reporting practices. We are daily asked to provide ART care to patients with an extremely poor prognosis, but we can no longer invoke the absence of capacity as the basis of our decision to proceed or not; this decision must now be made actively rather than passively. We routinely cite the importance of respect for patient autonomy as a key reason for acceding to patient requests in such cases. However, in the present situation where ART success rates must be publicly reported, it is imperative to acknowledge that these cases routinely provoke many discussions and significant concern about the potential impact on good business. It is our very difficult challenge to come to terms with issues 626
of autonomy, futility, and the business impact of these decisions on ART practice. Predictive outcome data for many of our poor prognosis patients is generally very clear. We all understand that the 47-year-old woman who requests IVF using her own eggs has essentially no chance of successfully conceiving a child. We can have some discussion about the 43-year-old that has had three or four unsuccessful cycles with her own eggs, but not a very long one. I personally feel no clinical ambivalence or professional remorse in informing such patients that I respect their request but am unwilling to offer them an IVF cycle. To those patients who are dissatisfied with this decision, I cite the American Society for Reproductive Medicine Ethics Committee's excellent opinion on futile care, defined as <1% likelihood of resulting in the desired outcome (1). At the same time, I appreciate that many of my respected colleagues are far more open to considering these and similar requests, citing the importance of patient autonomy in the context of a treatment that we would all acknowledge to represent very low medical risk to the patient. In fact, the Ethics Committee document endorses the possible appropriateness of offering care deemed to be futile to individuals or couples who will receive some psychological benefit (as determined in conjunction with a mental health professional) from it (1, 2). Although I do not, in any way, intend to question the values of highly ethical colleagues, I must admit that I am frankly unsure and more than a bit uncomfortable about the degree to which the ‘‘business’’ of IVF intersects with respect for autonomy in these cases. I would contrast the scenarios described previously to that of a younger woman, perhaps in her early 30s, who has an extremely poor prognosis perhaps due to an insurmountable uterine problem or profoundly diminished ovarian reserve and multiple failed cycles. She is assuredly deserving of the same autonomy in requesting therapy that is futile, yet my anecdotal observations would lead me to suggest that we are generally less responsive to such requests compared with the previous cases. I do not believe it to be coincidental that public reporting of IVF success rates in the former cases would be expected to have less of a deleterious marketing impact than in the latter case. Many reproductive endocrinologists cautioned policy makers and legislators about this point as the initiation of national reporting requirements was being considered in the 1980s. Regrettably, we are still struggling with how best to handle such cases. I often find myself considering these difficult matters in the context of the broader health care debate. We all know and often hear alarming data about the proportion of health care dollars spent in the United States on end-stage futile and/or critical care patients with chronic disease and multiorgan failure. These estimates suggest that 28% of total Medicare dollars ($170 billion/year for Medicare alone) are spent in the last 6 months of life (3), and up to 40% of these funds in the last 30 days. Interestingly, the possibility that patients in fee-for-service plans may have higher expenditures than those in other types
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Fertility and Sterility® of plans has been discussed (4). I do not believe that anyone should suggest that these clinical decisions are based on business considerations, but one could certainly speculate about how such decisions might be made differently if patients were funded through population-based plans rather than on a fee-for-service basis. I believe that it would be of value if we looked at our own reproductive medicine practices through the same prism; would we behave differently in a payment model where we would be directly economically disadvantaged for providing futile care? As I implied at the outset of these ‘‘Inklings,’’ I do not claim to have clear answers for myself or for others, but I do think it is timely to seriously address the potential conflicts we face in providing end of (reproductive) life care. We must ensure that we are following the American Society for Reproductive Medicine's ethical guidelines that mandate thoughtful and comprehensive counseling, generally in conjunction with a mental health professional. Existing literature suggests that physicians counseling patients at the end of life do not provide a clear discussion of prognosis in one-third or more of cases. We should aspire to do better than this at the end of reproductive life, and commit to studies that will evaluate how successful we are in doing so. Finally, we should be prepared to actively and openly address business-related issues with the patients for whom we have the privilege of caring. They should be fully informed, and comfortable that the clinical decisions that have been reached are firmly based on solid clinical, practical, and ethical principles and are not unduly influenced by any factors that could be construed as questionable.
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William D. Schlaff, M.D. Department of Obstetrics and Gynecology, Sidney Kimmel Medical College, Jefferson Medical College, Philadelphia, Pennsylvania http://dx.doi.org/10.1016/j.fertnstert.2015.01.017 You can discuss this article with its authors and with other ASRM members at http://fertstertforum.com/schlaffw-autonomy-futilitygood-business-art/ Use your smartphone to scan this QR code and connect to the discussion forum for this article now.* * Download a free QR code scanner by searching for “QR scanner” in your smartphone’s app store or app marketplace.
REFERENCES 1.
2. 3.
4.
Ethics Committee of the American Society for Reproductive Medicine. Fertility treatment when the prognosis is very poor or futile: a committee opinion. Fertil Steril 2012;98:e6–9. Clapp D. Helping patients know when ‘enough is enough.’ Sexuality, Reproduction & Menopause 2004;2:159–62. Pastnernak S. Medicare NewsGroup. End-of-life care constitutes third rail of U.S. health care policy debate. June 3, 2013. Available at: http:// www.medicarenewsgroup.com/context/understanding-medicare-blog/ understanding-medicare-blog/2013/06/03/end-of-life-care-constitutes-thirdrail-of-u.s.-health-care-policy-debate. Last accessed February 2, 2015. Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC, Morden NE, et al. Change in end-of-life care for Medicare beneficiaries; site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013;309:470–7.
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of autonomy, futility, and the business impact of these decisions on ART practice. Predictive outcome data for many of our poor prognosis patients is generally very clear. We all understand that the 47-year-old woman who requests IVF using her own eggs has essentially no chance of successfully conceiving a child. We can have some discussion about the 43-year-old that has had three or four unsuccessful cycles with her own eggs, but not a very long one. I personally feel no clinical ambivalence or professional remorse in informing such patients that I respect their request but am unwilling to offer them an IVF cycle. To those patients who are dissatisfied with this decision, I cite the American Society for Reproductive Medicine Ethics Committee's excellent opinion on futile care, defined as <1% likelihood of resulting in the desired outcome (1). At the same time, I appreciate that many of my respected colleagues are far more open to considering these and similar requests, citing the importance of patient autonomy in the context of a treatment that we would all acknowledge to represent very low medical risk to the patient. In fact, the Ethics Committee document endorses the possible appropriateness of offering care deemed to be futile to individuals or couples who will receive some psychological benefit (as determined in conjunction with a mental health professional) from it (1, 2). Although I do not, in any way, intend to question the values of highly ethical colleagues, I must admit that I am frankly unsure and more than a bit uncomfortable about the degree to which the ‘‘business’’ of IVF intersects with respect for autonomy in these cases. I would contrast the scenarios described previously to that of a younger woman, perhaps in her early 30s, who has an extremely poor prognosis perhaps due to an insurmountable uterine problem or profoundly diminished ovarian reserve and multiple failed cycles. She is assuredly deserving of the same autonomy in requesting therapy that is futile, yet my anecdotal observations would lead me to suggest that we are generally less responsive to such requests compared with the previous cases. I do not believe it to be coincidental that public reporting of IVF success rates in the former cases would be expected to have less of a deleterious marketing impact than in the latter case. Many reproductive endocrinologists cautioned policy makers and legislators about this point as the initiation of national reporting requirements was being considered in the 1980s. Regrettably, we are still struggling with how best to handle such cases. I often find myself considering these difficult matters in the context of the broader health care debate. We all know and often hear alarming data about the proportion of health care dollars spent in the United States on end-stage futile and/or critical care patients with chronic disease and multiorgan failure. These estimates suggest that 28% of total Medicare dollars ($170 billion/year for Medicare alone) are spent in the last 6 months of life (3), and up to 40% of these funds in the last 30 days. Interestingly, the possibility that patients in fee-for-service plans may have higher expenditures than those in other types
VOL. 103 NO. 3 / MARCH 2015
Fertility and Sterility® of plans has been discussed (4). I do not believe that anyone should suggest that these clinical decisions are based on business considerations, but one could certainly speculate about how such decisions might be made differently if patients were funded through population-based plans rather than on a fee-for-service basis. I believe that it would be of value if we looked at our own reproductive medicine practices through the same prism; would we behave differently in a payment model where we would be directly economically disadvantaged for providing futile care? As I implied at the outset of these ‘‘Inklings,’’ I do not claim to have clear answers for myself or for others, but I do think it is timely to seriously address the potential conflicts we face in providing end of (reproductive) life care. We must ensure that we are following the American Society for Reproductive Medicine's ethical guidelines that mandate thoughtful and comprehensive counseling, generally in conjunction with a mental health professional. Existing literature suggests that physicians counseling patients at the end of life do not provide a clear discussion of prognosis in one-third or more of cases. We should aspire to do better than this at the end of reproductive life, and commit to studies that will evaluate how successful we are in doing so. Finally, we should be prepared to actively and openly address business-related issues with the patients for whom we have the privilege of caring. They should be fully informed, and comfortable that the clinical decisions that have been reached are firmly based on solid clinical, practical, and ethical principles and are not unduly influenced by any factors that could be construed as questionable.
VOL. 103 NO. 3 / MARCH 2015
William D. Schlaff, M.D. Department of Obstetrics and Gynecology, Sidney Kimmel Medical College, Jefferson Medical College, Philadelphia, Pennsylvania http://dx.doi.org/10.1016/j.fertnstert.2015.01.017 You can discuss this article with its authors and with other ASRM members at http://fertstertforum.com/schlaffw-autonomy-futilitygood-business-art/ Use your smartphone to scan this QR code and connect to the discussion forum for this article now.* * Download a free QR code scanner by searching for “QR scanner” in your smartphone’s app store or app marketplace.
REFERENCES 1.
2. 3.
4.
Ethics Committee of the American Society for Reproductive Medicine. Fertility treatment when the prognosis is very poor or futile: a committee opinion. Fertil Steril 2012;98:e6–9. Clapp D. Helping patients know when ‘enough is enough.’ Sexuality, Reproduction & Menopause 2004;2:159–62. Pastnernak S. Medicare NewsGroup. End-of-life care constitutes third rail of U.S. health care policy debate. June 3, 2013. Available at: http:// www.medicarenewsgroup.com/context/understanding-medicare-blog/ understanding-medicare-blog/2013/06/03/end-of-life-care-constitutes-thirdrail-of-u.s.-health-care-policy-debate. Last accessed February 2, 2015. Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC, Morden NE, et al. Change in end-of-life care for Medicare beneficiaries; site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013;309:470–7.
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