- Email: [email protected]
Pregnancy and CKD: Lessons on Communication From Patients
Editorial Pregnancy and CKD: Lessons on Communication From Patients Related Article, p. 951
I
mproving patients’ outcomes has consumed clinical nephrologists for the past 50 years. Nephrologists have focused much of their energy on improving clinical measures (anemia, parathyroid hormone level, calcium level, phosphorus level, urine protein excretion, and urea reduction ratio) in order to increase the survival of patients at all stages of chronic kidney disease (CKD). Consequently, the nephrology community has spent years refining measures of kidney function, defining dialysis adequacy in terms of smallsolute clearance, and developing immunosuppression protocols to extend transplant function in patients undergoing kidney transplantation. Reviewing the early literature on dialysis adequacy, Peter Lundin, a nephrologist and dialysis patient, suggested that adequacy of dialysis should be measured primarily by the patient’s quality of life: a well-dialyzed patient would feel well, be active and employed, and conceive and have children if desired.1 Until recently, kidney failure was considered an effective means of birth control, with chances for infertility increasing as CKD stage worsened. Similarly, in the past, nephrologists recommended that women treated by dialysis not conceive until they underwent successful transplantation, with normal creatinine level and blood pressure and on minimal immunosuppression, often advocating a 2-year wait posttransplantation before attempting conception.2 Women treated by dialysis, particularly slow nocturnal hemodialysis, are now more likely to conceive.3 Although pre-eclampsia, prematurity, and small-for-gestational age infants are more common in women with earlier stages of CKD than in the healthy population, 74% of pregnancies in women with a creatinine level , 1.4 mg/dL result in live births.2 With increasing experience with pregnancy, some nephrologists advocate for less restrictive recommendations regarding pregnancy in CKD.3,4 However, until now, little has been written about our patients regarding their experiences and expectations for motherhood, a core aspect of a well-lived and valued life for many women. In this issue of AJKD, Tong et al5 remind us of the importance of listening to our patients in order Address correspondence to Jean L. Holley, MD, Nephrology, S2S2, Carle Physician Group, 611 W Park St, Urbana, IL 61801. E-mail: [email protected] Ó 2015 by the National Kidney Foundation, Inc. 0272-6386 http://dx.doi.org/10.1053/j.ajkd.2015.09.006 936
to better understand how they value their lives within the context of living with CKD and how we can better serve our patients through respectful counseling around the issue of pregnancy. In a qualitative study addressing women’s perspectives on pregnancy, interviews with 41 women (31 with a kidney transplant, 5 with native CKD stages 3b-5, 2 on hemodialysis therapy, and 3 on peritoneal dialysis therapy) focused on their pregnancy experience (n 5 24 [59%] who had a previous or current pregnancy) and/or their feelings and thoughts about possible pregnancy.5 The aim of the study was to gain information to improve prepregnancy counseling and care in women with CKD, a worthy goal because few women with CKD report receiving counseling about contraception or pregnancy.5,6 The study group of Tong et al came from 2 Australian renal units, and participants were predominantly white (83%), married or living with a partner (78%), well educated (46% with a university degree), employed full- or part-time (73%), and living in a metropolitan environment (78%). Fifty-nine percent had had a previous pregnancy, with most pregnancies occurring over a year before the interviews and 34% occurring more than 6 years before the interviews. Only 5% of pregnancies were unplanned. Of the 25 pregnancies, 19 (46%) resulted in a live birth, of which 13 (32%) were premature births. The other 14 (56%) pregnancies ended in miscarriage, termination, or stillborn birth. Tong et al5 identified 6 themes in the women’s responses to the interview questions about pregnancy: bodily failure, devastating loss, intransigent guilt, rationalizing consequential risks, strengthening resolve, and reorienting focus. Under bodily failure, Tong et al note women’s feelings of physical and medical fragility associated with possible pregnancy and its effects on their CKD, potentially adversely affecting not only their lives, but the lives of their babies. Women felt trapped in their failing bodies, noting that even with a successful kidney transplant, ongoing health could not be ensured. It was not uncommon for these women to recall their physicians urging them to delay pregnancy for an indefinite time, leading to anxiety and the fear that pregnancy would never be possible. Being denied motherhood by physicians counseling against pregnancy deprived many of these women of autonomy and consideration of pregnancy. None of the women recounted discussions of pregnancy as an expected outcome of a successful transplantation. The loss of the prospect of motherhood resulted in an identity change for Am J Kidney Dis. 2015;66(6):936-938
Editorial
some of these women, who found only barriers (including financial costs and complicated legal systems) when subsequently considering adoption as an alternative strategy for motherhood.5 Intransigent guilt was represented by a sense of failing their partners by not being able to have children. A fear of minimizing their living donor’s sacrifice was raised by some women who thought that the potential stress of pregnancy on a transplanted kidney affected their decision to pursue pregnancy and also the relationship with the donor.5 Choosing survival over pregnancy and avoiding fetal harm were issues that emerged under the rationalizing consequential risks theme identified by Tong et al. For some women, pregnancy offered hope and opportunity for something positive within the overall negative aspects of life with CKD. Some women found that positive input from their physicians contributed to hope and their determination to continue with the pregnancy, despite fears of complications, a theme of strengthening resolve as defined by Tong et al.5 Women who chose not to pursue pregnancy reported shifting their focus from valuing parenthood to valuing life, particularly freedom from dialysis therapy for those who underwent successful transplantation (reorienting focus). The manner in which the physician communicated with the woman announcing a pregnancy could either offer important support and encouragement or be viewed as a criticism of a perceived reckless decision. Because most interview responses were based on women’s remembrances, bias may affect the study. Physicians’ encouragement or negative responses could be exaggerated as recalled by study participants. However, the themes that emerged from the interviews are reminiscent of the effects of physician counseling on advance care planning or substance abuse: positive reinforcement and expectations for success can be used as reaffirming tools fostering a sense of autonomy and encouragement for success, while admonitions of risk and criticism of decision making can foster anxiety and hopelessness, reinforcing a sense of impossibility and doom within the world of a chronic and progressive disease. The study population was not representative of the US CKD patient population, raising the issue of generalizability of the findings and the thematic categories identified. Despite these concerns, Tong et al should be congratulated for soliciting patient experiences, particularly in relation to physician counseling and perceived expressed attitudes. Shared decision making about pregnancy management and family planning should involve proactive counseling, including addressing Am J Kidney Dis. 2015;66(6):936-938
patient values and preferences.7 The decision of whether to have children is complicated, even more so for women living with a life-limiting illness. In order to make informed decisions about pursuing or continuing pregnancy, women with CKD must rely on their physicians to provide prognostic information, including potential risks to the mother and fetus. Nephrologists should be mindful of the goals of CKD care: to provide a normal life for an individual with CKD. Only our patients can tell us what defines a normal life. For many women, motherhood and pregnancy remain an important aspect of life that they hope to experience. We need to engage our patients in conversations about preventing pregnancy if desired, but also about ways to mitigate the risks of pregnancy for women who view motherhood as a valued aspect of a good quality of life with CKD. To have meaningful conversations with women and assist in their decision-making process regarding pregnancy, nephrologists need to be informed of the most recent data on clinical outcomes of pregnancy in all stages of CKD. Current clinical data show increased conception rates and increased successful pregnancy outcomes with nocturnal dialysis.3 Nephrologists should be mindful and discuss this option, as well as consider the possibility of home hemodialysis for their patients who are interested in having a child. The findings of Tong et al suggest that we need to communicate not only the medical risks of pregnancy to women with CKD, but also engage with them in shared decision making around this topic by soliciting and listening to their values about family, autonomy, and security. Jean L. Holley, MD University of Illinois, Urbana-Champaign Carle Physician Group Urbana, Illinois Sai Subhodhini Reddy, MD University of Rochester Medical Center Rochester, New York
ACKNOWLEDGEMENTS Support: None. Financial Disclosure: None.
REFERENCES 1. Harper G. A decade of change for patients. Nephrol News Issues. 1997;11(2):26-27. 2. Hou S. Pregnancy in renal transplant recipients. Adv Chronic Kidney Dis. 2013;20(3):253-259. 3. Hladunewich MA, Hou S, Odutayo A, et al. Intensive hemodialysis associates with improved pregnancy outcomes: a 937
Holley and Reddy Canadian and United States cohort comparison. J Am Soc Nephrol. 2014;25(5):1103-1109. 4. Blume C, Pischke S, von Versen-Hoynck F, Gunter HH, Gross MM. Pregnancies in liver and kidney transplant recipients: a review of the current literature and recommendation. Best Pract Res Clin Obstet Gynaecol. 2014;28(8): 1123-1136. 5. Tong A, Brown MA, Winkelmayer WC, Craig JC, Jesudason S. Perspectives on pregnancy in women with
938
CKD: a semistructured interview study. Am J Kidney Dis. 2015;66(6):951-961. 6. Watnick S. Pregnancy and contraceptive counseling of women with chronic kidney disease and kidney transplants. Adv Chronic Kidney Dis. 2007;14(2):126-131. 7. Tong A, Jesudason S, Craig C, Winkelmayer WC. Perspectives on pregnancy in women with chronic kidney disease: systematic review of qualitative studies. Nephrol Dial Transplant. 2015;30(4):652-661.
Am J Kidney Dis. 2015;66(6):936-938
I
mproving patients’ outcomes has consumed clinical nephrologists for the past 50 years. Nephrologists have focused much of their energy on improving clinical measures (anemia, parathyroid hormone level, calcium level, phosphorus level, urine protein excretion, and urea reduction ratio) in order to increase the survival of patients at all stages of chronic kidney disease (CKD). Consequently, the nephrology community has spent years refining measures of kidney function, defining dialysis adequacy in terms of smallsolute clearance, and developing immunosuppression protocols to extend transplant function in patients undergoing kidney transplantation. Reviewing the early literature on dialysis adequacy, Peter Lundin, a nephrologist and dialysis patient, suggested that adequacy of dialysis should be measured primarily by the patient’s quality of life: a well-dialyzed patient would feel well, be active and employed, and conceive and have children if desired.1 Until recently, kidney failure was considered an effective means of birth control, with chances for infertility increasing as CKD stage worsened. Similarly, in the past, nephrologists recommended that women treated by dialysis not conceive until they underwent successful transplantation, with normal creatinine level and blood pressure and on minimal immunosuppression, often advocating a 2-year wait posttransplantation before attempting conception.2 Women treated by dialysis, particularly slow nocturnal hemodialysis, are now more likely to conceive.3 Although pre-eclampsia, prematurity, and small-for-gestational age infants are more common in women with earlier stages of CKD than in the healthy population, 74% of pregnancies in women with a creatinine level , 1.4 mg/dL result in live births.2 With increasing experience with pregnancy, some nephrologists advocate for less restrictive recommendations regarding pregnancy in CKD.3,4 However, until now, little has been written about our patients regarding their experiences and expectations for motherhood, a core aspect of a well-lived and valued life for many women. In this issue of AJKD, Tong et al5 remind us of the importance of listening to our patients in order Address correspondence to Jean L. Holley, MD, Nephrology, S2S2, Carle Physician Group, 611 W Park St, Urbana, IL 61801. E-mail: [email protected] Ó 2015 by the National Kidney Foundation, Inc. 0272-6386 http://dx.doi.org/10.1053/j.ajkd.2015.09.006 936
to better understand how they value their lives within the context of living with CKD and how we can better serve our patients through respectful counseling around the issue of pregnancy. In a qualitative study addressing women’s perspectives on pregnancy, interviews with 41 women (31 with a kidney transplant, 5 with native CKD stages 3b-5, 2 on hemodialysis therapy, and 3 on peritoneal dialysis therapy) focused on their pregnancy experience (n 5 24 [59%] who had a previous or current pregnancy) and/or their feelings and thoughts about possible pregnancy.5 The aim of the study was to gain information to improve prepregnancy counseling and care in women with CKD, a worthy goal because few women with CKD report receiving counseling about contraception or pregnancy.5,6 The study group of Tong et al came from 2 Australian renal units, and participants were predominantly white (83%), married or living with a partner (78%), well educated (46% with a university degree), employed full- or part-time (73%), and living in a metropolitan environment (78%). Fifty-nine percent had had a previous pregnancy, with most pregnancies occurring over a year before the interviews and 34% occurring more than 6 years before the interviews. Only 5% of pregnancies were unplanned. Of the 25 pregnancies, 19 (46%) resulted in a live birth, of which 13 (32%) were premature births. The other 14 (56%) pregnancies ended in miscarriage, termination, or stillborn birth. Tong et al5 identified 6 themes in the women’s responses to the interview questions about pregnancy: bodily failure, devastating loss, intransigent guilt, rationalizing consequential risks, strengthening resolve, and reorienting focus. Under bodily failure, Tong et al note women’s feelings of physical and medical fragility associated with possible pregnancy and its effects on their CKD, potentially adversely affecting not only their lives, but the lives of their babies. Women felt trapped in their failing bodies, noting that even with a successful kidney transplant, ongoing health could not be ensured. It was not uncommon for these women to recall their physicians urging them to delay pregnancy for an indefinite time, leading to anxiety and the fear that pregnancy would never be possible. Being denied motherhood by physicians counseling against pregnancy deprived many of these women of autonomy and consideration of pregnancy. None of the women recounted discussions of pregnancy as an expected outcome of a successful transplantation. The loss of the prospect of motherhood resulted in an identity change for Am J Kidney Dis. 2015;66(6):936-938
Editorial
some of these women, who found only barriers (including financial costs and complicated legal systems) when subsequently considering adoption as an alternative strategy for motherhood.5 Intransigent guilt was represented by a sense of failing their partners by not being able to have children. A fear of minimizing their living donor’s sacrifice was raised by some women who thought that the potential stress of pregnancy on a transplanted kidney affected their decision to pursue pregnancy and also the relationship with the donor.5 Choosing survival over pregnancy and avoiding fetal harm were issues that emerged under the rationalizing consequential risks theme identified by Tong et al. For some women, pregnancy offered hope and opportunity for something positive within the overall negative aspects of life with CKD. Some women found that positive input from their physicians contributed to hope and their determination to continue with the pregnancy, despite fears of complications, a theme of strengthening resolve as defined by Tong et al.5 Women who chose not to pursue pregnancy reported shifting their focus from valuing parenthood to valuing life, particularly freedom from dialysis therapy for those who underwent successful transplantation (reorienting focus). The manner in which the physician communicated with the woman announcing a pregnancy could either offer important support and encouragement or be viewed as a criticism of a perceived reckless decision. Because most interview responses were based on women’s remembrances, bias may affect the study. Physicians’ encouragement or negative responses could be exaggerated as recalled by study participants. However, the themes that emerged from the interviews are reminiscent of the effects of physician counseling on advance care planning or substance abuse: positive reinforcement and expectations for success can be used as reaffirming tools fostering a sense of autonomy and encouragement for success, while admonitions of risk and criticism of decision making can foster anxiety and hopelessness, reinforcing a sense of impossibility and doom within the world of a chronic and progressive disease. The study population was not representative of the US CKD patient population, raising the issue of generalizability of the findings and the thematic categories identified. Despite these concerns, Tong et al should be congratulated for soliciting patient experiences, particularly in relation to physician counseling and perceived expressed attitudes. Shared decision making about pregnancy management and family planning should involve proactive counseling, including addressing Am J Kidney Dis. 2015;66(6):936-938
patient values and preferences.7 The decision of whether to have children is complicated, even more so for women living with a life-limiting illness. In order to make informed decisions about pursuing or continuing pregnancy, women with CKD must rely on their physicians to provide prognostic information, including potential risks to the mother and fetus. Nephrologists should be mindful of the goals of CKD care: to provide a normal life for an individual with CKD. Only our patients can tell us what defines a normal life. For many women, motherhood and pregnancy remain an important aspect of life that they hope to experience. We need to engage our patients in conversations about preventing pregnancy if desired, but also about ways to mitigate the risks of pregnancy for women who view motherhood as a valued aspect of a good quality of life with CKD. To have meaningful conversations with women and assist in their decision-making process regarding pregnancy, nephrologists need to be informed of the most recent data on clinical outcomes of pregnancy in all stages of CKD. Current clinical data show increased conception rates and increased successful pregnancy outcomes with nocturnal dialysis.3 Nephrologists should be mindful and discuss this option, as well as consider the possibility of home hemodialysis for their patients who are interested in having a child. The findings of Tong et al suggest that we need to communicate not only the medical risks of pregnancy to women with CKD, but also engage with them in shared decision making around this topic by soliciting and listening to their values about family, autonomy, and security. Jean L. Holley, MD University of Illinois, Urbana-Champaign Carle Physician Group Urbana, Illinois Sai Subhodhini Reddy, MD University of Rochester Medical Center Rochester, New York
ACKNOWLEDGEMENTS Support: None. Financial Disclosure: None.
REFERENCES 1. Harper G. A decade of change for patients. Nephrol News Issues. 1997;11(2):26-27. 2. Hou S. Pregnancy in renal transplant recipients. Adv Chronic Kidney Dis. 2013;20(3):253-259. 3. Hladunewich MA, Hou S, Odutayo A, et al. Intensive hemodialysis associates with improved pregnancy outcomes: a 937
Holley and Reddy Canadian and United States cohort comparison. J Am Soc Nephrol. 2014;25(5):1103-1109. 4. Blume C, Pischke S, von Versen-Hoynck F, Gunter HH, Gross MM. Pregnancies in liver and kidney transplant recipients: a review of the current literature and recommendation. Best Pract Res Clin Obstet Gynaecol. 2014;28(8): 1123-1136. 5. Tong A, Brown MA, Winkelmayer WC, Craig JC, Jesudason S. Perspectives on pregnancy in women with
938
CKD: a semistructured interview study. Am J Kidney Dis. 2015;66(6):951-961. 6. Watnick S. Pregnancy and contraceptive counseling of women with chronic kidney disease and kidney transplants. Adv Chronic Kidney Dis. 2007;14(2):126-131. 7. Tong A, Jesudason S, Craig C, Winkelmayer WC. Perspectives on pregnancy in women with chronic kidney disease: systematic review of qualitative studies. Nephrol Dial Transplant. 2015;30(4):652-661.
Am J Kidney Dis. 2015;66(6):936-938