Impediments to communication and relationships between infertility care providers and patients

Impediments to communication and relationships between infertility care providers and patients Background: Infertility patients generally see provider-patient communication and relationships as important, but as often insufficient, raising critical questions regarding why these gaps persist, and how they might best be addressed. Methods: Semi-structured interviews of approximately one hour each were conducted with 37 ART providers and patients (17 physicians, 10 other health providers, and 10 patients) and were thematically analyzed. Results: Patients see clinicians’ interactions as ranging widely from good to bad, related to several specific barriers and factors. Patients and providers may differ in their physical and emotional experiences, expectations concerning treatment outcomes and uncertainties, and time frames and finances, generating dynamic processes and tensions. Characteristics of particular providers, clinics and patients can also vary. Infertility patients tend to find only one outcome acceptable – a “take home baby”– rather than partial success, as is the case with many other diseases. Yet most IVF cycles fail. Many patients must pay considerable out-of-pocket expenses for infertility treatment, exacerbating disappointments and frustrations. Providers often work in competitive, entrepreneurial markets, and “hype” their potential success. After treatment failures, providers may feel guilty and withdraw from patients. Yet these behaviors can antagonize patients more than physicians realize, aggravating patient stresses. Several providers described how they understood patients’ needs and perceptions more fully only after becoming infertility patients themselves. Interactions with not only physicians, but other providers (e.g., nurses and staff) can play key roles. Patients may be willing to understand these impediments, but providers often communicate these obstacles and reasons poorly or not at all, furthering tensions. Conclusions: These data, the first to examine several critical aspects of challenges that infertility providers and patients face in communication and relationships, suggest that several key dynamic processes and factors may be involved, and need to be addressed. While prior research has shown that infertility patients value, but often feel disappointed in relationships with clinicians, the present data highlight several specific impediments, and thus have critical implications for future practice, research, guidelines and education. Keywords: Provider-patient relationships, Provider-patient communication, Infertility treatment, Fertilization, In vitro, Ethics, Policy, Education, Medical, Empathy, Patient-centered care Correspondence: rlk2@cumc.columbia.edu Columbia University, 1051 Riverside Drive #15, New York, NY 10032, USA © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Klitzman BMC Women's Health (2018) 18:84 Page 2 of 12 Background regarding patients on waiting lists at NHS clinics [12]). Infertility patients generally see provider-patient com- In the US, ART is not publically funded, and hence munication and relationships as critical, but often as in- “public” clinics and this distinction (of publically-funded sufficient, raising critical questions about why these gaps vs. private) do not exist. Yet US patients can conse- persist and how they might be best addressed. Many in- quently face considerable stresses paying for infertility dividuals are infertile, but face various obstacles in treatment [13]. obtaining optimal infertility treatment; and examining Major questions emerge regarding the implications these barriers is thus of importance. and effects of difficulties in infertility provider-patient Quantitative surveys have suggested that patients communication and relationships in the US and else- choose IVF clinics based on both published success rates where, but strikingly, have not been examined in prior and quality of service [1, 2]. In general, challenges in studies. Hence, these questions were investigated as part provider-patient relationships may result partly from the of a larger qualitative interview study exploring pro- fact that physicians focus on evidence-based medicine, viders’ and patients’ decisions, attitudes and experiences which is doctor-centered, with doctors interpreting sci- concerning several critical aspects of IVF and entific data, while patients are more concerned with pre-implantation genetic diagnosis (PGD), including sex their own individual needs, preferences and experiences selection [14], maternal age cut-offs [15], numbers of [3]. Research has also examined the related concept of embryos transferred [16], reductions of multi-fetal preg- Patient-Centered Care (PCC) – i.e., that patients want to nancies [17], diseases warranting PGD [18], insurance be treated as people, with respect for their values, pref- coverage [13], use of egg donor agencies [19], unconven- erences, needs and education. Studies have described tional combinations and quality of prospective parents how patient-centered infertility care has ten dimensions, [20, 21], referrals for treatment [22], doctor-shopping related both to the system (information, competence, co- [23], and religious issues that arise [24]. ordination, accessibility, continuity, and physical com- The present paper thus examines critical data that fort) and human factors (staff attitude and relationships, have not heretofore been probed or published, generated communication, privacy and support) [4]. Dutch pa- from questions regarding difficulties in clinician-patient tients, for instance, often perceive weakness in their fer- relationships and communications – e.g., whether these tility care [5], including inadequate information perceived difficulties affect patients’ experiences, and if regarding long term consequences of treatment (59%), so, how. Specifically, while patients may feel dissatisfied, lack of clarity about which interventions are reimbursed questions arise concerning why these tensions and gaps (50%) and about whom to contact for problems at nights persist; how providers themselves see and experience and on weekends (54%), “no transparency in quality/per- these strains; whether clinicians are aware of these per- formance” of clinics (61%), “too much time before a ceived deficits, and attempt to respond, and if so, how; treatment plan was provided” (47%), and physicians not what factors are involved; and whether these tensions “deal[ing] well” with treatment-related anxiety and de- might be addressed, and if so, how. pression (40%). Yet, clinicians underestimate the value to patients of Methods patient-centeredness [6], while overestimating the value Briefly, as described elsewhere, 37 semi-structured inter- of ‘continuity’ of providers, and significantly misjudging views of around one hour each were conducted with several aspects of care, including the comprehensiveness physicians and other providers involved with ART, and of treatment information [7]. Physicians value with patients [13–24]. patient-centeredness less than patients do. Patients Qualitative methods were used because they can opti- would trade off 9.8% of pregnancy rate to see a friendly mally elicit the full range and types of views, relationships and interested doctor, instead of an unfriendly and un- and practices involved, and can inform subsequent quanti- interested one [5]. Researchers have concluded that fer- tative research. Qualitative methods have successfully elu- tility clinics should be more patient-centered. cidated key aspects of patient views and decisions Yet infertility providers can face various stresses re- regarding other aspects of IVF, such as those related to pa- lated to the organizational aspects of the clinic [8, 9], tients’ disclosures of use of donor oocytes [25]. contributing to patients feeling dissatisfied [2, 10]. Em- Geertz [26] has suggested, from a theoretical stand- bryologists, for instance, engage in “emotional labor” re- point, examining individuals’ lives not by imposing the- garding difficult patients, and giving “bad news” to oretical structures, but by attempting to comprehend the patients [11]. In Europe, providers often work in either individuals’ own experiences and perspectives to obtain publically-funded infertility care (e.g., through the UK’s a “thick description.” The present study involved tech- National Health Service), or in private clinics, and each niques of comparing data from different contexts for setting may pose different sets of challenges (e.g., similarities and differences, to see if they suggest Klitzman BMC Women's Health (2018) 18:84 Page 3 of 12 hypotheses. This technique generates new categories and Instruments questions, and checks them for reasonableness, and has The semi-structured interview questionnaire (Additional been used in several other studies on key aspects of file 1) was drafted by drawing on prior literature, and ex- health behavior and doctor-patient relationships and plored patients’ and providers’ attitudes, decisions and communications in genetics and other areas [27–31]. experiences. The interview included both fixed ques- During the ongoing interviewing process, the Principal tions, and follow-up questions to probe responses. The Investigator (PI) continually considered how participants focus of the interview, about which patients were differed from or resembled each other, and the cultural, informed, was on experiences with infertility treatment, social, and medical factors and contexts that might con- including interactions with providers. tribute to variations. Data analysis Transcriptions and initial analyses of data occurred during Participants the period when interviews were conducted, and helped As seen on Table 1, 37 semi-structured telephone inter- shape subsequent interviews. Once all interviews were views of around 1 h each were conducted and analyzed. completed, subsequent analyses were conducted in two Both providers and patients were included to elucidate phases, primarily by the PI and trained research assistants communication and relationships between these groups. (RAs). In phase I, they independently examined a subset Providers were recruited through national American So- of interviews to gauge factors that affected participants’ ciety of Reproductive Medicine meetings (e.g., PGD and experiences, identifying categories of “core” themes and is- mental health provider interest group meetings), sues that were then given codes. The RAs and PI read word-of-mouth, and listservs. The PI approached indi- each interview, systematically coding sections of text to viduals via these methods to see if they might be inter- assign “core” codes or categories (e.g., instances of chal- ested in participating in the study, and if so, the PI then lenges in clinician-patient communication, and factors in- sent them information about it. Most individuals whom volved such as provider, patient and medical the PI asked agreed to participate, and then did so. A characteristics). While reading the interviews, a topic mental health listserv was also used, received by ap- name (or code) was inserted beside each section of the proximately 60 members (not all of whom are active), of interview to indicate the themes discussed. The RAs and whom 15 responded, and the first 8 respondents then PI then worked together to reconcile these independently participated. Patients were recruited through providers, developed coding schemes into a single scheme. A coding patient advocacy organizations, listservs, emails and manual was then prepared, defining each code and exam- word-of-mouth (e.g., via other patients). Interviewees ining areas of disagreement until consensus was reached. were from across the United States. Interviews were The coders discussed new themes that did not fit into the conducted by phone and were transcribed. Since inter- original coding framework, and modified the manual views were conducted by phone, not in person, an infor- when deemed appropriate. mation sheet was sent to all participants who then In the second phase, the coders independently provided verbal consent to participate. The Columbia content-analyzed the data to identify the main subcat- University Department of Psychiatry Institutional Review egories, and ranges of variation within each of the core Board approved the study and all the procedures codes. They reconciled the sub-themes each coder iden- involved. tified into a single set of “secondary” codes and an elabo- rated set of core codes. These subcodes assessed subcategories and other situational and social factors. Table 1 Characteristics of Sample Such subcategories included, for instance, specific types Male Female Total of medical, provider or patient characteristics that im- PHYSICIANS 14 3 17 peded provider-patient communication (e.g., large size of Physicians who are also patients 0 1 1 clinics, fears of lawsuits, or providers “hyping” their Type of Practice approaches). University affiliated 5 1 6 Codes and sub-codes were then used in analyzing all interviews. Two coders analyzed each interview to en- Private Practice 9 2 11 sure coding reliability. Multiple codes were used where OTHER ART PROVIDERS (e.g., mental health 19 10 necessary. Similarities and differences were assessed providers, nurses) among participants, exploring categories that arose, vari- Other providers who are also patients 0 3 3 ations within categories, and factors involved. Areas of PATIENTS 1 9 10 disagreement were probed through further analysis until TOTAL 16 21 37 consensus was achieved. Earlier and later coded excerpts Klitzman BMC Women's Health (2018) 18:84 Page 4 of 12 were regularly compared to check consistency and ac- ranging widely from good to bad, and how dynamic ten- curacy in ratings. sions between providers and patients result from several sets of differences between these two groups of individ- Results uals as well as characteristics of individual providers and Interviewees were 27 ART providers: 17 physicians patients. In brief, as described more fully below, contrast- (MDs) and 10 other providers (OPs). These other pro- ing experiences of treatment-related physical and emo- viders consisted of seven mental health providers, two tional distress, outcomes, uncertainties, expectations, nurses and one patient advocacy organization worker. time frames and finances pose challenges that can ham- Ten patients (PTs) were also interviewed. per communication and relationships between these two Providers discussed interactions with many patients groups. and with colleagues. Patients frequently discussed inter- actions with multiple providers and other patients. Most Differing perceptions of providers and patients patients had been undergoing infertility treatment for concerning communication and relationships several years, and had tried several interventions unsuc- Perceptions of providers as caring cessfully. Patients varied in their stage of treatment, Patients often have mixed, complex feelings about the seeking either first or second children. Among patients, quality of their communication and relationships with seven worked (six full-time, and one part-time), two infertility providers. Many clinicians try their best to were graduate students, and one was unemployed. They communicate and interact well with patients. Patients ranged in age from 25 to 48 (mean: 36.1). at times felt that their clinicians were well-informed, As seen in Fig. 1, these data reveal several themes, helpful and emotionally supportive. As one patient’s suggesting how patients see clinicians’ interactions as doctor said, Fig. 1 Issues Concerning Provider-Patient Communication and Relationships Klitzman BMC Women's Health (2018) 18:84 Page 5 of 12 I just want to make sure you’re okay. How are you first time I met with her, spoke about all the nuts and doing? What are you doing to take care of you? Are bolts, but said, “I just want you to know that I’m really you going to therapy? Support group meetings? sorry that this has happened to you...” I thought, Talking to friends? [PT#8]. “Thank God, somebody understands.” [PT#5]. In working together to create new life, providers them- The patient-centeredness of not only clinicians, but of- selves can end up feeling closely connected to their pa- fice staff – even receptionists – can be important. (“The tients. Many providers themselves find the work bedside manner of the office and the practice helps – personally very rewarding, and become highly invested how the receptionist talks to you on the phone when in the results. you first call…Everything.” [MD#15]). Patients may also see various providers and staff It’s fun to watch those children grow. Many patients not individually, but as a whole, experiencing and re- send me pictures every Christmas of their families as ferring to them as “they.” Patient dissatisfaction oc- they grow. That’s been some of the joy – silent curs particularly when treatment cycles have failed. accolades, but they mean the most. I like to savor Many such women may then feel that they are left them. [MD#8]. alone to process the loss, and that providers are in- sensitive. Such patients may feel that they need more, Nurses, too, play critical roles, and may become very but that they are then abandoned by their providers. involved both professionally and emotionally in patients’ care. Nurses can come to feel closely connected to, and The first IVF did not work. They were very quick to invested in, their patients. push me into another one. They don’t give you time to digest it or do anything. I got pregnant, but had a I’ve lost sleep over patients I’ve grown strongly miscarriage. They did not follow up with me…They attached to. I really want them to be pregnant. During just left me! [PT#6]. those 12 days after the transfer and before their pregnancy test, I’m sweating it out as much as they Other patients, disappointed and frustrated by the are. [OP#7]. impersonality of care, may actually try to reach out and engage their physician, but may feel rebuffed. (“I Physicians, too, can become emotionally engaged with had to push back and ask to talk to the doctor. I their patients. (“Patients bring us up or down.” [MD#9]) know they’re busy, but it’s important to have someone Many patients appreciate their doctors’ efforts, even who knows and cares who you are.” [PT#7]). when failure occurs. (“The most humbling letter we get When patients feel angry, they can end up lambasting is, ‘Ididn’t get pregnant but thank you for taking care of doctors as well as staff. (“I’ve seen patients go off on the me.’” [MD#9]). administrators at the front desk. A lot of patients treat staff very badly.” [OP#5]). Perceptions of providers as callous Yet though many patients feel that their provider’s Roles of differences between patients and providers communication was at times sufficient, others felt dis- Several sets of differences between patients and pro- appointed. Doctors are dedicated, and generally at- viders – medical, physical, emotional; cognitive, logistical tempt to help and prepare patients mentally for and financial – can contribute to perceptions of inad- treatment difficulties, but may not always fully suc- equate communication and relationships. ceed. Given ongoing failures, patients frequently feel dissatisfied with both treatment difficulties and com- Differences in physical experiences of treatment munication problems. Patients can feel a lack of em- Patients – but not providers – experience and may com- pathy from clinics as a whole, including not only plain about pain. Yet patients often see providers as ignor- doctors, but nurses and other staff members as well. ing these inherent difficulties and clinically-important Even within clinics, however, variations can occur be- complaints. tween providers. The doctors are basically surgeons, and a lot don’t I had an old-fashioned nurse…“Here are some nee- have great bedside manner. The sixth week in the dles. Go do this”…With the IUI, I felt she tried to pregnancy, I had a sonogram, and then, two hours give me false hope. With the miscarriage, I started later had cramps. They seemed pretty bad, and I went bleeding. She said, “It happens. Just don’t worry about back to the doctor, who made it seem like I was being it. Come in for an appointment.” Another nurse, the histrionic. In fact, I ended up with an ovarian torsion Klitzman BMC Women's Health (2018) 18:84 Page 6 of 12 and needed emergency surgery. I personally liked my The nurses are impatient with women in our doctor, but he handled that really poorly. [OP#9]. situation, because we are high-maintenance, often calling a lot: “This is happening. Is this normal?” Preg- Patients may like their physicians, but nevertheless feel nant patients are neurotic: “I have this. I feel a cramp disappointed by aspects of care, underscoring the com- here.” Nurses need some education about why it’s im- plexities involved in these relationships. portant to be sensitive, and have understanding and Indeed, providers who undergo fertility treatments compassion for women going through this. [PT#7]. themselves may come to appreciate far more fully than before the stresses and physical discomforts that patients These women may be “fragile” in part because these face. Until becoming patients themselves, clinicians may treatments involve high stakes – the life of a possible fu- thus dismiss patient complaints that these providers do ture child. not themselves experience and may thus find hard to Relatedly, having a child can provide important and grasp fully. One such physician-patient said: unique personal meaning and purpose to patients, but can be largely “routine” and become “routinized” to pro- I’m so much a better doctor than when I started. I’ve viders. (“Doctors do this for a living. But for me, it’smy learned: instead of saying, “You’re just being a pain in the life!” [PT#5]). butt,” or, “You should stop talking,” or “Ihavetoget out Providers observe this difference as well. of here,” you need to just shut up and listen, and believe your patients. They’re not all lying to you! When I was There is a certain kind of day-to-day grind to it, be- having my first IVF attempt, lying there with my feet up cause of the gravity of what we do. I can certainly get in thestirrupsas a patient, andtheywerestickingthis stuck in the tasks that need to get done. I have three giant needle through my vagina into my ovaries, and embryo transfers that represent incredibly stressful sucking out eggs, I would say every time they stuck the days for those three couples. But it’s, yeah [noncha- needle into my ovary “That hurts a lot.” The IVF lantly], I have three embryo transfers. [MD#9]. specialist said, “Oh, the ovary doesn’tfeelthe pain,that’s your perineum.” He didn’t believe me!...When people Patients may feel wary of the sterile, mechanical proce- said they had weird reactions to drugs, I didn’t believe dures and routinization that pay little attention to the them. But since then, I’ve had very strange reactions, too. intense emotional aspects of the experience, though rec- No matter what the science says, every patient is ognizing the reasons for this routinization. Still, pro- individual. Give them the benefit of the doubt! [MD#15]. viders and patients perceive their experiences of these procedures from dramatically different perspectives. Differences in emotional/existential aspects of treatment At a lot of places, you feel you’re in a baby factory. A Infertility patients can experience complex and difficult huge emotional component is lost. It’s understandable emotions, yet feel that providers are insufficiently sensi- – it’s their job, they do this every day, it becomes tive to these, reflecting in part lack of training and com- routine for them. But for the patient, it’s anything but. peting perspectives and promises. Patients felt that, [PT#5]. given stresses patients encounter going through these procedures, clinicians could potentially be more sensitive in presenting and disclosing possible medical impedi- Differing expectations concerning outcomes and ments to successful pregnancy. uncertainties of treatment Given desires for a child, physical burdens and costs of Doctors are sincere, but maybe not properly trained treatment, patients seek hope, and providers must frame on how emotionally fragile a woman is going through and manage expectations. Yet clinicians face quandaries this. Doctors should never say, “Maybe there’s regarding how to respond to the inherent uncertainties something wrong with your eggs.” It could be true, and complex emotions involved – how to frame ambigu- but patients don’t always need to hear the worst case ities about possible outcomes - and may come across ei- scenario. I may not be able to handle it right now. ther as overly-optimistic (“hyping” their services) or Sometimes doctors are giving us too much credit: giving “reality checks”. Providers need to convey ad- “here are the options.” [PT#7]. equately to patients the relatively low success rate of IVF (to avoid giving patients overly high expectations of a Patients may see themselves as posing challenges for “take-home baby”), the possible psychiatric and other providers, but tended to feel that providers could none- side effects of fertility medications, and the emotional theless try to be more aware of these difficulties. difficulties of “losing a child” if a miscarriage occurs. Yet Klitzman BMC Women's Health (2018) 18:84 Page 7 of 12 patients may not want to hear, and may have had diffi- more direct assistance than providers may feel comfort- culty accepting this information. able giving. Patients may feel that doctors both are not entirely forthcoming and may not want to give, or prepare pa- I just try to give patients realistic expectations, so tients for, bad news. they’re not disappointed. I gave a “reality check” to a 43-year-old woman who hasn’t yet found Mr. Right, I wonder what they teach OB/GYNs about what to do and was trying to decide whether to use a sperm when it looks like a woman will miscarry. Each time, donor: “You’re 43. Even though you’ve never tried to it felt like the writing was on the wall, but nobody get pregnant before, these are your odds: just being told me that the yolk sacs on the ultrasound weren’t scientific about this, with one cycle of IVF and PGD, the right size, or that the heart rate at seven weeks without any reproductive or medical issues, there’s wasn’t what it should have been. We’re so numb; we only a 25% success rate. If you’re 43, those odds go hear part of that, but we weren’t told, “Brace down by an order of magnitude.” [MD#6]. yourselves. This is probably not going to go well.” Aren’t they supposed to tell you that they think you’re Providers can face a hard balance to avoid being either going to miscarry? Is that medically irresponsible to too definite or not definitive enough. “Reality checks” send a patient out waiting for a miscarriage? It seems may be appropriate, but be seen by patients as harsh, like unless the heartbeat has stopped, they don’t though certain patients may have unrealistic hopes. completely tell you. [PT#10]. The fact that considerable uncertainties exist concern- ing the outcomes of ART can also be hard for clini- Complex statistics, in particular, can be hard to grasp, cians to convey, and for patients to grasp. Some patients convey and apply for any one patient. Physicians may felt that doctors seemed too definitive in decisions and thus vary in how they communicate these odds to pa- predictions, and at times later ended up being wrong. As tients – what verbal descriptors and adjectives they one patient said, employ. There’s a lack of complete knowledge here, which is A lot of what I try to do is manage expectations. A lot very frustrating. There’s some science to it, but it’s not of providers use adjectives: high, low, moderate. That’s all science. It’s a little bit of hocus pocus. They wanted fine, but you’re not always on the same page. So using to trigger the cycle that led to me being pregnant with the absolute numbers is much more useful for patients. my daughter. I pushed back: “I think I should go Some IVF providers say: “This procedure is very likely another day. Maybe the eggs weren’t mature enough.” to be successful”– in their own universe, compared to The doctor called and said, “If you want to go another 47-year-old women who have had ten miscarriages. But day, go another day.” I said, “Should I? You’re the that may translate into only a 25% rate per cycle. It is doctor.” He said, “If you don’t go another day, and it likely to be successful for a woman with no infertility doesn’t work, you’re going to think that’s why. So I issues. [MD#6]. think you should just go another day.” He basically said: “This is an art and a science. It’s not just one of Patients generally seek not merely statistics, but ways of the other.” [PT#7]. interpreting and making sense of these numbers. Patients often have trouble figuring out how to apply to themselves Uncertainties can emerge, too because many patients the varied statistics on averages that physicians provide. have varying degrees of sub-infertility, rather than complete infertility per se, and can potentially become pregnant on Doctors have to use statistics, but sometimes I just their own but face diagnostically unclear medical impedi- want an honest opinion. Sometimes the doctors just ments. Many patients may feel, however, that providers are give you the statistics. I finally had to say, “What would insufficiently sensitive about these ambiguities. you do?” He told me, “If my daughter was going through this, this is what I would tell her to do.” It made The worst part is there’s some insensitivity in the me feel, “Okay, this is what I’mgoing to do”. [PT#9]. field. Nurses, embryologists, or the REIs, will say, “Maybe there’s something wrong with your eggs or Patients may feel that statistics alone are not “honest” sperm.” They did a sperm test on my husband and (i.e., straightforward), wanting instead a clear or defini- said, “Something is abnormal here. You need to redo tive answer of how to proceed. the test.” My husband hates doing sperm tests. So I Providers face tensions of exactly how helpful to be, said, “Just wait to the last minute on that.” The next and in what ways, since many patients may wish for month, I got pregnant on our own! [PT#7]. Klitzman BMC Women's Health (2018) 18:84 Page 8 of 12 Differing time frames present time, but remembering details of such past Physicians confront many competing stresses, and may interactions. not have enough time with patients. I don’t like when a doctor sits down and looks at my It would help if doctors gave a little bit more time to chart, trying to figure out who I am. Read my chart their patients, rather than just coming in, doing a before you come into the room! I have had doctors sonogram, and going out. That’s hard, because these who are really good at this: they have hundreds of doctors have to see a lot of patients. But these patients, and probably don’t remember, but they seem patients need some emotional understanding. [OP#4]. to. That’s comforting. [PT#7]. Doctors in a clinic may also rotate being on-call, which Providers’ specific individual characteristics and expe- can hamper continuity of care and disturb patients, but riences can shape their responses to these challenges. A be inevitable. Still, patients may feel frustrated, though variety of providers’ personal characteristics can be in- nevertheless understanding these limitations. volved, but are not always readily predicted by simple or obvious objective categories such as gender. I went to an office with five fertility doctors. The doctor I was referred to, whom I wanted to see, It’s personality-dependent. Some men very closely wasn’t always my doctor. So I didn’t feel any one watched what their wives have gone through, and can be person was in charge of my treatment. He came up compassionate and non-judgmental. But in general, I with the plan, but then the doctor on call that day think women are a little bit more patient and less judg- decided the next step. That was very difficult. [PT #5]. mental. Every woman has also had a period, and knows what that feels like. Yet that sometimes makes them The fact that patients must often pay all or much of more judgmental, because they tolerate their’sjustfine, the costs of treatment out-of-pocket exacerbates these and just don’t believe other women who are in agonizing tensions as well. pain. It’s more personality than anything else. [MD#15]. Factors involved in characteristics of individual clinics, Clinics and practices themselves also range in size and providers and patients institutional cultures in ways that affect perceptions of Institutional and professional characteristics of individual care and potential tensions between providers and pa- providers tients . Clinics vary in how they are organized, and The structure and logistics of clinics, care and profes- structure interactions with patients. sional roles can also create obstacles and pressures. The patient above, who complained about five doctors rotat- At some facilities, you feel like cattle. You’re just being ing in a clinic, added, herded through. That’swhat most facilities do. Yougo in for your blood work and sonogram and leave. The At a more private office, that wouldn’t have been the doctor reviews it after you’re gone. And they call you in case. But this office is supposedly one of the best in the afternoon. You never have any doctor-patient con- the state, and is five miles from my house. So it was tact until the transfer and the retrieval. [PT#7]. more realistic for me, but difficult. Still, I was very pleased with them. They were compassionate and Several interviewees suggested that larger, multi-doctor skilled. One doctor, in particular, would sit for two practices may seem less caring than smaller ones. As one hours if you needed, it, to go over every question you provider-patient who works in a small practice said, “In a had. [PT#5]. very small clinic, we give people individualized care. I’ve had patients who were initially in a larger clinic, and felt Despite the frustrations she encountered, she ended up like a number.” [OP#10]. giving birth to twins, and looked back favorably on the ex- Many patients concur, but may not always be wholly perience overall. Depending in part on their own personal accurate and objective. experiences, patients may be able to understand and ap- preciate the challenges that providers confront. Multi-doctor practices are not there for the patient. Too many hands are in the pot. Too many people Personal characteristics of individual providers saying, “I see it going this way.” They don’t stick to Patients often see providers as varying widely in specific the plan. With one-doctor offices, the doctor, even behaviors and characteristics regarding interactions, though you don’t get to see him all the time, makes such as not only communicating effectively at the himself available for you, and is more there for the Klitzman BMC Women's Health (2018) 18:84 Page 9 of 12 patient: “It’s breaking my heart to see what you’ve patients can’t accept that bad things just happen. gone through, and what you’ve spent when you should They blame the doctors. Sometimes it is the doctor’s have just come to me from the beginning.” [PT#6]. fault, but not always. [OP#4]. Yet the doctor at this last clinic, though expressing Fears of lawsuits can further impede communication. empathy, may also be somewhat biased in suggesting (“Physicians may fear potential lawsuits. But I think if that his treatment will be better than that of the patient’s they show a humane approach, they’re less likely to be prior physicians. sued.” [OP#4]). Poor communication between doctors and patients Characteristics of individual patients may result from mutual reticence. As suggested above, medical, social, psychological, and financial characteristics of individual patients can also The doctor may be reluctant to reach out to patients, affect these tensions and experiences. Patients can vary too. Some patients can be very angry that it didn’t in the type and strength of their emotional reactions, work, despite the doctor having very clearly told them and needs for psychosocial support, related in part to their likelihood of success. [OP #4]. the amount of treatment failure they have had, and their age and responses, which will affect how much oppor- Alternatively, when confronting such treatment fail- tunity they have to undergo additional IVF. ures, many providers try to remain communicative, which can help maintain or improve PCC. Dynamic tensions These differences can fuel dynamic tensions that become Families get frustrated when they don’t get answers, exacerbated when, for instance, treatments fail. When but doctors try their best. I’m not asking doctors to be interventions do not succeed, patients may feel disap- friends, but to be available. Many call back, give the pointed and angry and blame doctors, who themselves patient as much information as they can, and will do may feel frustrated, helpless and/or guilty, and thus their best to help the family, and want to know withdraw or distance themselves. Doctors may have updates: Did the PGD work? Was it successful? And trouble discussing failures with patients, creating a vi- they’re so happy when the patient has a healthy baby. cious cycle. Many patients may understand and accept [OP #7]. these failures (“A great reward is those people who in the end say, ‘We know we tried our best’” [MD#8]); but Several patients and providers suggested, in particular, others have paid relatively large amounts of money, that explanations of why communication is at times dif- undergone physical burdens, and had high hopes dashed, ficult can potentially help. and feel disappointed, shame, and anger. When strains, difficulties or failure occur in the treatment, patients can One receptionist was really stressed out, having an easily feel stressed and frustrated. emergency situation going on, so she cut me off short. But as soon as she said, “We have an emergency. I Women feel like pariahs if the cycle hasn’tworked, or need to call you back,” I totally understood. I know they have an early miscarriage. Nobody really talks to how emergencies go. But the other receptionists have them. Nurses are beginning to do that more. But all been good. [MD#15]. doctors should reach out to the patient. It goes a long way to hear from the doctor – that the doctor is very busy, but actually cares. These women feel like failures, Discussion and that the doctor isn’t going to be very interested in These data, the first to examine why IVF clinicians have them – because they failed, and haven’tcontributed difficulty communicating and interacting with patients, positively to their doctor’s success rate. [OP#4]. suggest that five sets of differences between providers and patients, and several characteristics of individual cli- Clinicians may not respond well to these failures, and nicians and patients can create dynamic tensions that may distance themselves, worsening tensions. impede communication and relationships. Providers and patients frequently respond differently to the medical is- The doctors may not want to reach out and then be sues involved, including high levels of uncertainty and blamed. Doctors can feel guilty that they failed, too. complex statistics. Success rates are increasing, but still After pregnancy losses, a lot of the doctors feel very generally below 50%, particularly for older women [32]. sad and guilty, even if there was no negligence or Consequently, patients often have overly high expecta- malpractice. And we’re a litigious society. A lot of tions of success and definitive answers. Providers may Klitzman BMC Women's Health (2018) 18:84 Page 10 of 12 either “hype” their success to attract patients, or offer fact that in fertility treatment, patients seek and find accept- reality checks – yet both of these approaches can gener- able only one acceptable outcome (a “take home baby”)ra- ate tensions with patients. Patient can feel high levels of ther than partial success (e.g., partial symptomatic relief of emotional distress, partly since they seek only one out- a chronic disease). Many patients pay all or significant pro- come (a “take home baby”), and view partial success portions of treatment costs themselves, which may lead (e.g., a pregnancy that ends in a miscarriage) as failure, them to seek “the best” possible care, heightening desires while providers are very aware that most IVF cycles fail. for “good bedside manner.” In a competitive, entrepreneur- Patient complaints about provider interactions may ial market, physicians may also overly “hype” their success. not all be wholly accurate, but reflect these individuals’ Issues of sexual behavior, reproduction and infertility are feelings, and are thus important to note. Whether and to also extremely sensitive, and traditionally taboo to discuss what degree these physicians are in fact having difficul- [37], heightening needs for sensitivity. These data thus ties communicating and interacting with patients is un- highlight the impact of contrasts in patients’ and providers’ clear, but the fact that patients perceive such problems is particular roles in these medical, emotional, temporal, fi- critical, since these perceptions can affect whether and nancial and institutional contexts. how patients pursue treatment. Patients who end up with a child may ultimately look While prior research has shown that patients often feel back at these experiences more favorably, but most cy- disappointed by communication and relationships with cles do not end up producing a baby [23]. Patients com- their providers [2–7], the present data suggest that sev- monly undergo treatment over several years, filled with eral different specific barriers and factors exist, involving disappointments and struggles with costs and interven- dynamic processes. While the past literature has sug- tion failures, and perceive deficits in doctor-patient com- gested that clinics should address their organization, and munication. Even patients who ultimately succeed and have more frequent appointments and better quality of look back more favorably on the experience as a whole information for patients [2], the present data suggest may perceive significant gaps in provider-patient rela- several additional specific obstacles, details and aspects tionships that hamper care. Several patients had had one of potential improvements that have not been examined child using ARTs and were now trying to have a second and should be addressed at several levels. Statistical and child. emotional uncertainties and complexities inherent in in- These data have critical implications for future prac- fertility treatment, and characteristics of particular pro- tice, research, guidelines and education. For practice, viders, clinics, and patients can impede doctor-patient providers can address in several ways patients’ percep- communication and relationships. The fact that several tions of gaps in communication and relationships. Par- physicians described how they understood patients’ ticular aspects of clinics, including interactions with not needs and perceptions only after becoming infertility pa- only physicians but other providers as well, can shape tients themselves highlights needs to explore and articu- the structure and organization of clinics, and can be im- late more fully these patient perspectives – the proved. These data highlight how interactions, including components, effects and importance of these viewpoints. seemingly small casual comments, can shape patients’ Complex dynamic tensions and processes are involved. perceptions that their care is lacking. Nuanced ap- In general, physicians have been found to have difficulty proaches are needed to grasp how each group sees and coping with treatment failures. For instance, obstetri- responds to the other. cians have been found to feel guilty when patients have These data suggest, too, that physicians can involve a stillbirth [33]; and physicians frequently feel guilty mental health providers and non-physician staff more to about medical errors, which can make these mistakes benefit patients confronting treatment failures and other difficult to disclose to patients [34]. Yet physician stresses, though these staff, too, need to be as aware and non-communication can antagonize patients more than sensitive as possible to these issues. Many patients ap- these doctors realize, aggravating patient frustration and pear willing to understand these impediments, but pro- ultimately harming the profession in the long run. viders may communicate about these obstacles and Though pain is inherently hard to communicate to reasons poorly or not at all, fostering frustration. Clini- others [35, 36], physicians can become more aware of cians may thus need to communicate better about these this difficulty itself. Patients may also not fully appreciate impediments, sensitively manage expectations about care, the pressures and stressors that providers themselves and address these processes and professional and personal confront. Hence, enhanced patient appreciation of these obstacles at multiple levels. More attention to these issues clinician challenges could also potentially improve and education by providers about these inherent uncer- provider-patient interactions. tainties and realistic odds of treatment success are critical. The current data suggest how the contexts of fertility care Clinicians should realize that patients may have overly op- can also strongly affect several factors involved – e.g., the timistic hopes, as well as difficulties hearing and grasping Klitzman BMC Women's Health (2018) 18:84 Page 11 of 12 that the odds of success are overall less than 50% per Additional file cycle, and that uncertainties can remain. Additional file 1: Semi-Structured Interview Questionnaire (Sample These data suggest several questions for future re- Questions). (DOCX 15 kb) search concerning how providers respond to ongoing treatment failures, how often clinicians withdraw, in Abbreviations what ways, and with what effect, what percentage of pa- ART: Assisted reproductive technology; CDC: Center for Disease Control and tients have unrealistic expectations, how, and to what Prevention; IUI: Intrauterine insemination; IVF: In-vitro fertilization; MD: Medical doctor; OB/GYN: Obstetrician/gynecologist; OP: Other provider; degree. Future research can also investigate more fully PCC: Patient-centered care; PGD: Pre-implantation genetic diagnosis; the experiences of clinicians who become infertility PT: Patient; REI: Reproductive endocrinology and infertility specialist; patients themselves, to assess more thoroughly what SART: Society for Assisted Reproductive Technology specifically they now understand that they previously Acknowledgements did not, and what barriers stymied this earlier The author would like to thank Daniel Marcus-Toll and Bela Fishbeyn for appreciation. their assistance with data analysis, and Kristina Khanh-Thy Hosi, Sarah These data also have key implications for education, Kiskadden-Bechtel, Charlene R. Sathi, Alexa A. Woodward, and especially Patricia Contino, for their assistance with the preparation of the manuscript. highlighting needs to train physicians, other providers, patients, and the public to address more fully the emo- Funding tional complexities with which these patients grapple, Funding for this paper is supported by grant number UL1 RR024156 from and needs to assist patients in developing realistic expec- the National Center for Research Resources (NCRR), The Greenwall Foundation, and the John Simon Guggenheim Memorial Foundation. These tations. Though providers may fear being sued by pa- funders were not involved in any way in the design of the study, collection, tients for infertility treatment failure, patients in the US analysis, interpretation of the data or writing of the manuscript. and elsewhere have sued infertility providers for various Availability of data and materials other reasons (e.g., accidental use of another patient’s The data analyzed in the current study are available from the author on gametes, loss or destruction of embryos, and birth of an reasonable request. “extra” child), but do not appear to have sued for failure to become pregnant [38–43]. Increased awareness of Disclaimer The opinions expressed here are the authors’ and do not reflect the policies these facts can potentially help providers. and positions of the National Institutes of Health, the US Public Health For policy, professional organizations can develop Service, or the US Department of Health and Human Services. guidelines that encourage providers to avoid hype, and Author’s contributions help patients develop realistic expectations. SART and The author read and approved the final manuscript. CDC could also alter their requirements of what statistics clinics report, in order to aid patients more, providing Ethics approval and consent to participate more user-friendly breakdowns of data to assist patients in Since interviews were all conducted by phone, rather than in person, an information sheet was sent to all participants who then gave verbal consent obtaining realistic rather than “hyped” understandings of to participate. The Columbia University Department of Psychiatry Institutional the odds of success – e.g., by reporting success rates per Review Board approved the study and all procedures involved. embryo transferred, rather than only per IVF cycle (which Competing interests can be higher if two or more embryos are transferred). The author declares that he has no competing interests. These data have several potential imitations. The sam- ple size is adequate for qualitative research to reveal the Publisher’sNote themes and issues that emerge, but not for statistical Springer Nature remains neutral with regard to jurisdictional claims in analyses of how different groups (e.g. physicians vs. pa- published maps and institutional affiliations. tients) may vary. Patients complain here about both pri- Received: 13 October 2016 Accepted: 21 May 2018 vate and hospital-based clinics, yet generally do not have sufficient experiences with both to generalize validly be- tween them. 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Impediments to communication and relationships between infertility care providers and patients

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Medicine & Public Health; Gynecology; Maternal and Child Health; Reproductive Medicine
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Abstract

Background: Infertility patients generally see provider-patient communication and relationships as important, but as often insufficient, raising critical questions regarding why these gaps persist, and how they might best be addressed. Methods: Semi-structured interviews of approximately one hour each were conducted with 37 ART providers and patients (17 physicians, 10 other health providers, and 10 patients) and were thematically analyzed. Results: Patients see clinicians’ interactions as ranging widely from good to bad, related to several specific barriers and factors. Patients and providers may differ in their physical and emotional experiences, expectations concerning treatment outcomes and uncertainties, and time frames and finances, generating dynamic processes and tensions. Characteristics of particular providers, clinics and patients can also vary. Infertility patients tend to find only one outcome acceptable – a “take home baby”– rather than partial success, as is the case with many other diseases. Yet most IVF cycles fail. Many patients must pay considerable out-of-pocket expenses for infertility treatment, exacerbating disappointments and frustrations. Providers often work in competitive, entrepreneurial markets, and “hype” their potential success. After treatment failures, providers may feel guilty and withdraw from patients. Yet these behaviors can antagonize patients more than physicians realize, aggravating patient stresses. Several providers described how they understood patients’ needs and perceptions more fully only after becoming infertility patients themselves. Interactions with not only physicians, but other providers (e.g., nurses and staff) can play key roles. Patients may be willing to understand these impediments, but providers often communicate these obstacles and reasons poorly or not at all, furthering tensions. Conclusions: These data, the first to examine several critical aspects of challenges that infertility providers and patients face in communication and relationships, suggest that several key dynamic processes and factors may be involved, and need to be addressed. While prior research has shown that infertility patients value, but often feel disappointed in relationships with clinicians, the present data highlight several specific impediments, and thus have critical implications for future practice, research, guidelines and education. Keywords: Provider-patient relationships, Provider-patient communication, Infertility treatment, Fertilization, In vitro, Ethics, Policy, Education, Medical, Empathy, Patient-centered care Correspondence: rlk2@cumc.columbia.edu Columbia University, 1051 Riverside Drive #15, New York, NY 10032, USA © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Klitzman BMC Women's Health (2018) 18:84 Page 2 of 12 Background regarding patients on waiting lists at NHS clinics [12]). Infertility patients generally see provider-patient com- In the US, ART is not publically funded, and hence munication and relationships as critical, but often as in- “public” clinics and this distinction (of publically-funded sufficient, raising critical questions about why these gaps vs. private) do not exist. Yet US patients can conse- persist and how they might be best addressed. Many in- quently face considerable stresses paying for infertility dividuals are infertile, but face various obstacles in treatment [13]. obtaining optimal infertility treatment; and examining Major questions emerge regarding the implications these barriers is thus of importance. and effects of difficulties in infertility provider-patient Quantitative surveys have suggested that patients communication and relationships in the US and else- choose IVF clinics based on both published success rates where, but strikingly, have not been examined in prior and quality of service [1, 2]. In general, challenges in studies. Hence, these questions were investigated as part provider-patient relationships may result partly from the of a larger qualitative interview study exploring pro- fact that physicians focus on evidence-based medicine, viders’ and patients’ decisions, attitudes and experiences which is doctor-centered, with doctors interpreting sci- concerning several critical aspects of IVF and entific data, while patients are more concerned with pre-implantation genetic diagnosis (PGD), including sex their own individual needs, preferences and experiences selection [14], maternal age cut-offs [15], numbers of [3]. Research has also examined the related concept of embryos transferred [16], reductions of multi-fetal preg- Patient-Centered Care (PCC) – i.e., that patients want to nancies [17], diseases warranting PGD [18], insurance be treated as people, with respect for their values, pref- coverage [13], use of egg donor agencies [19], unconven- erences, needs and education. Studies have described tional combinations and quality of prospective parents how patient-centered infertility care has ten dimensions, [20, 21], referrals for treatment [22], doctor-shopping related both to the system (information, competence, co- [23], and religious issues that arise [24]. ordination, accessibility, continuity, and physical com- The present paper thus examines critical data that fort) and human factors (staff attitude and relationships, have not heretofore been probed or published, generated communication, privacy and support) [4]. Dutch pa- from questions regarding difficulties in clinician-patient tients, for instance, often perceive weakness in their fer- relationships and communications – e.g., whether these tility care [5], including inadequate information perceived difficulties affect patients’ experiences, and if regarding long term consequences of treatment (59%), so, how. Specifically, while patients may feel dissatisfied, lack of clarity about which interventions are reimbursed questions arise concerning why these tensions and gaps (50%) and about whom to contact for problems at nights persist; how providers themselves see and experience and on weekends (54%), “no transparency in quality/per- these strains; whether clinicians are aware of these per- formance” of clinics (61%), “too much time before a ceived deficits, and attempt to respond, and if so, how; treatment plan was provided” (47%), and physicians not what factors are involved; and whether these tensions “deal[ing] well” with treatment-related anxiety and de- might be addressed, and if so, how. pression (40%). Yet, clinicians underestimate the value to patients of Methods patient-centeredness [6], while overestimating the value Briefly, as described elsewhere, 37 semi-structured inter- of ‘continuity’ of providers, and significantly misjudging views of around one hour each were conducted with several aspects of care, including the comprehensiveness physicians and other providers involved with ART, and of treatment information [7]. Physicians value with patients [13–24]. patient-centeredness less than patients do. Patients Qualitative methods were used because they can opti- would trade off 9.8% of pregnancy rate to see a friendly mally elicit the full range and types of views, relationships and interested doctor, instead of an unfriendly and un- and practices involved, and can inform subsequent quanti- interested one [5]. Researchers have concluded that fer- tative research. Qualitative methods have successfully elu- tility clinics should be more patient-centered. cidated key aspects of patient views and decisions Yet infertility providers can face various stresses re- regarding other aspects of IVF, such as those related to pa- lated to the organizational aspects of the clinic [8, 9], tients’ disclosures of use of donor oocytes [25]. contributing to patients feeling dissatisfied [2, 10]. Em- Geertz [26] has suggested, from a theoretical stand- bryologists, for instance, engage in “emotional labor” re- point, examining individuals’ lives not by imposing the- garding difficult patients, and giving “bad news” to oretical structures, but by attempting to comprehend the patients [11]. In Europe, providers often work in either individuals’ own experiences and perspectives to obtain publically-funded infertility care (e.g., through the UK’s a “thick description.” The present study involved tech- National Health Service), or in private clinics, and each niques of comparing data from different contexts for setting may pose different sets of challenges (e.g., similarities and differences, to see if they suggest Klitzman BMC Women's Health (2018) 18:84 Page 3 of 12 hypotheses. This technique generates new categories and Instruments questions, and checks them for reasonableness, and has The semi-structured interview questionnaire (Additional been used in several other studies on key aspects of file 1) was drafted by drawing on prior literature, and ex- health behavior and doctor-patient relationships and plored patients’ and providers’ attitudes, decisions and communications in genetics and other areas [27–31]. experiences. The interview included both fixed ques- During the ongoing interviewing process, the Principal tions, and follow-up questions to probe responses. The Investigator (PI) continually considered how participants focus of the interview, about which patients were differed from or resembled each other, and the cultural, informed, was on experiences with infertility treatment, social, and medical factors and contexts that might con- including interactions with providers. tribute to variations. Data analysis Transcriptions and initial analyses of data occurred during Participants the period when interviews were conducted, and helped As seen on Table 1, 37 semi-structured telephone inter- shape subsequent interviews. Once all interviews were views of around 1 h each were conducted and analyzed. completed, subsequent analyses were conducted in two Both providers and patients were included to elucidate phases, primarily by the PI and trained research assistants communication and relationships between these groups. (RAs). In phase I, they independently examined a subset Providers were recruited through national American So- of interviews to gauge factors that affected participants’ ciety of Reproductive Medicine meetings (e.g., PGD and experiences, identifying categories of “core” themes and is- mental health provider interest group meetings), sues that were then given codes. The RAs and PI read word-of-mouth, and listservs. The PI approached indi- each interview, systematically coding sections of text to viduals via these methods to see if they might be inter- assign “core” codes or categories (e.g., instances of chal- ested in participating in the study, and if so, the PI then lenges in clinician-patient communication, and factors in- sent them information about it. Most individuals whom volved such as provider, patient and medical the PI asked agreed to participate, and then did so. A characteristics). While reading the interviews, a topic mental health listserv was also used, received by ap- name (or code) was inserted beside each section of the proximately 60 members (not all of whom are active), of interview to indicate the themes discussed. The RAs and whom 15 responded, and the first 8 respondents then PI then worked together to reconcile these independently participated. Patients were recruited through providers, developed coding schemes into a single scheme. A coding patient advocacy organizations, listservs, emails and manual was then prepared, defining each code and exam- word-of-mouth (e.g., via other patients). Interviewees ining areas of disagreement until consensus was reached. were from across the United States. Interviews were The coders discussed new themes that did not fit into the conducted by phone and were transcribed. Since inter- original coding framework, and modified the manual views were conducted by phone, not in person, an infor- when deemed appropriate. mation sheet was sent to all participants who then In the second phase, the coders independently provided verbal consent to participate. The Columbia content-analyzed the data to identify the main subcat- University Department of Psychiatry Institutional Review egories, and ranges of variation within each of the core Board approved the study and all the procedures codes. They reconciled the sub-themes each coder iden- involved. tified into a single set of “secondary” codes and an elabo- rated set of core codes. These subcodes assessed subcategories and other situational and social factors. Table 1 Characteristics of Sample Such subcategories included, for instance, specific types Male Female Total of medical, provider or patient characteristics that im- PHYSICIANS 14 3 17 peded provider-patient communication (e.g., large size of Physicians who are also patients 0 1 1 clinics, fears of lawsuits, or providers “hyping” their Type of Practice approaches). University affiliated 5 1 6 Codes and sub-codes were then used in analyzing all interviews. Two coders analyzed each interview to en- Private Practice 9 2 11 sure coding reliability. Multiple codes were used where OTHER ART PROVIDERS (e.g., mental health 19 10 necessary. Similarities and differences were assessed providers, nurses) among participants, exploring categories that arose, vari- Other providers who are also patients 0 3 3 ations within categories, and factors involved. Areas of PATIENTS 1 9 10 disagreement were probed through further analysis until TOTAL 16 21 37 consensus was achieved. Earlier and later coded excerpts Klitzman BMC Women's Health (2018) 18:84 Page 4 of 12 were regularly compared to check consistency and ac- ranging widely from good to bad, and how dynamic ten- curacy in ratings. sions between providers and patients result from several sets of differences between these two groups of individ- Results uals as well as characteristics of individual providers and Interviewees were 27 ART providers: 17 physicians patients. In brief, as described more fully below, contrast- (MDs) and 10 other providers (OPs). These other pro- ing experiences of treatment-related physical and emo- viders consisted of seven mental health providers, two tional distress, outcomes, uncertainties, expectations, nurses and one patient advocacy organization worker. time frames and finances pose challenges that can ham- Ten patients (PTs) were also interviewed. per communication and relationships between these two Providers discussed interactions with many patients groups. and with colleagues. Patients frequently discussed inter- actions with multiple providers and other patients. Most Differing perceptions of providers and patients patients had been undergoing infertility treatment for concerning communication and relationships several years, and had tried several interventions unsuc- Perceptions of providers as caring cessfully. Patients varied in their stage of treatment, Patients often have mixed, complex feelings about the seeking either first or second children. Among patients, quality of their communication and relationships with seven worked (six full-time, and one part-time), two infertility providers. Many clinicians try their best to were graduate students, and one was unemployed. They communicate and interact well with patients. Patients ranged in age from 25 to 48 (mean: 36.1). at times felt that their clinicians were well-informed, As seen in Fig. 1, these data reveal several themes, helpful and emotionally supportive. As one patient’s suggesting how patients see clinicians’ interactions as doctor said, Fig. 1 Issues Concerning Provider-Patient Communication and Relationships Klitzman BMC Women's Health (2018) 18:84 Page 5 of 12 I just want to make sure you’re okay. How are you first time I met with her, spoke about all the nuts and doing? What are you doing to take care of you? Are bolts, but said, “I just want you to know that I’m really you going to therapy? Support group meetings? sorry that this has happened to you...” I thought, Talking to friends? [PT#8]. “Thank God, somebody understands.” [PT#5]. In working together to create new life, providers them- The patient-centeredness of not only clinicians, but of- selves can end up feeling closely connected to their pa- fice staff – even receptionists – can be important. (“The tients. Many providers themselves find the work bedside manner of the office and the practice helps – personally very rewarding, and become highly invested how the receptionist talks to you on the phone when in the results. you first call…Everything.” [MD#15]). Patients may also see various providers and staff It’s fun to watch those children grow. Many patients not individually, but as a whole, experiencing and re- send me pictures every Christmas of their families as ferring to them as “they.” Patient dissatisfaction oc- they grow. That’s been some of the joy – silent curs particularly when treatment cycles have failed. accolades, but they mean the most. I like to savor Many such women may then feel that they are left them. [MD#8]. alone to process the loss, and that providers are in- sensitive. Such patients may feel that they need more, Nurses, too, play critical roles, and may become very but that they are then abandoned by their providers. involved both professionally and emotionally in patients’ care. Nurses can come to feel closely connected to, and The first IVF did not work. They were very quick to invested in, their patients. push me into another one. They don’t give you time to digest it or do anything. I got pregnant, but had a I’ve lost sleep over patients I’ve grown strongly miscarriage. They did not follow up with me…They attached to. I really want them to be pregnant. During just left me! [PT#6]. those 12 days after the transfer and before their pregnancy test, I’m sweating it out as much as they Other patients, disappointed and frustrated by the are. [OP#7]. impersonality of care, may actually try to reach out and engage their physician, but may feel rebuffed. (“I Physicians, too, can become emotionally engaged with had to push back and ask to talk to the doctor. I their patients. (“Patients bring us up or down.” [MD#9]) know they’re busy, but it’s important to have someone Many patients appreciate their doctors’ efforts, even who knows and cares who you are.” [PT#7]). when failure occurs. (“The most humbling letter we get When patients feel angry, they can end up lambasting is, ‘Ididn’t get pregnant but thank you for taking care of doctors as well as staff. (“I’ve seen patients go off on the me.’” [MD#9]). administrators at the front desk. A lot of patients treat staff very badly.” [OP#5]). Perceptions of providers as callous Yet though many patients feel that their provider’s Roles of differences between patients and providers communication was at times sufficient, others felt dis- Several sets of differences between patients and pro- appointed. Doctors are dedicated, and generally at- viders – medical, physical, emotional; cognitive, logistical tempt to help and prepare patients mentally for and financial – can contribute to perceptions of inad- treatment difficulties, but may not always fully suc- equate communication and relationships. ceed. Given ongoing failures, patients frequently feel dissatisfied with both treatment difficulties and com- Differences in physical experiences of treatment munication problems. Patients can feel a lack of em- Patients – but not providers – experience and may com- pathy from clinics as a whole, including not only plain about pain. Yet patients often see providers as ignor- doctors, but nurses and other staff members as well. ing these inherent difficulties and clinically-important Even within clinics, however, variations can occur be- complaints. tween providers. The doctors are basically surgeons, and a lot don’t I had an old-fashioned nurse…“Here are some nee- have great bedside manner. The sixth week in the dles. Go do this”…With the IUI, I felt she tried to pregnancy, I had a sonogram, and then, two hours give me false hope. With the miscarriage, I started later had cramps. They seemed pretty bad, and I went bleeding. She said, “It happens. Just don’t worry about back to the doctor, who made it seem like I was being it. Come in for an appointment.” Another nurse, the histrionic. In fact, I ended up with an ovarian torsion Klitzman BMC Women's Health (2018) 18:84 Page 6 of 12 and needed emergency surgery. I personally liked my The nurses are impatient with women in our doctor, but he handled that really poorly. [OP#9]. situation, because we are high-maintenance, often calling a lot: “This is happening. Is this normal?” Preg- Patients may like their physicians, but nevertheless feel nant patients are neurotic: “I have this. I feel a cramp disappointed by aspects of care, underscoring the com- here.” Nurses need some education about why it’s im- plexities involved in these relationships. portant to be sensitive, and have understanding and Indeed, providers who undergo fertility treatments compassion for women going through this. [PT#7]. themselves may come to appreciate far more fully than before the stresses and physical discomforts that patients These women may be “fragile” in part because these face. Until becoming patients themselves, clinicians may treatments involve high stakes – the life of a possible fu- thus dismiss patient complaints that these providers do ture child. not themselves experience and may thus find hard to Relatedly, having a child can provide important and grasp fully. One such physician-patient said: unique personal meaning and purpose to patients, but can be largely “routine” and become “routinized” to pro- I’m so much a better doctor than when I started. I’ve viders. (“Doctors do this for a living. But for me, it’smy learned: instead of saying, “You’re just being a pain in the life!” [PT#5]). butt,” or, “You should stop talking,” or “Ihavetoget out Providers observe this difference as well. of here,” you need to just shut up and listen, and believe your patients. They’re not all lying to you! When I was There is a certain kind of day-to-day grind to it, be- having my first IVF attempt, lying there with my feet up cause of the gravity of what we do. I can certainly get in thestirrupsas a patient, andtheywerestickingthis stuck in the tasks that need to get done. I have three giant needle through my vagina into my ovaries, and embryo transfers that represent incredibly stressful sucking out eggs, I would say every time they stuck the days for those three couples. But it’s, yeah [noncha- needle into my ovary “That hurts a lot.” The IVF lantly], I have three embryo transfers. [MD#9]. specialist said, “Oh, the ovary doesn’tfeelthe pain,that’s your perineum.” He didn’t believe me!...When people Patients may feel wary of the sterile, mechanical proce- said they had weird reactions to drugs, I didn’t believe dures and routinization that pay little attention to the them. But since then, I’ve had very strange reactions, too. intense emotional aspects of the experience, though rec- No matter what the science says, every patient is ognizing the reasons for this routinization. Still, pro- individual. Give them the benefit of the doubt! [MD#15]. viders and patients perceive their experiences of these procedures from dramatically different perspectives. Differences in emotional/existential aspects of treatment At a lot of places, you feel you’re in a baby factory. A Infertility patients can experience complex and difficult huge emotional component is lost. It’s understandable emotions, yet feel that providers are insufficiently sensi- – it’s their job, they do this every day, it becomes tive to these, reflecting in part lack of training and com- routine for them. But for the patient, it’s anything but. peting perspectives and promises. Patients felt that, [PT#5]. given stresses patients encounter going through these procedures, clinicians could potentially be more sensitive in presenting and disclosing possible medical impedi- Differing expectations concerning outcomes and ments to successful pregnancy. uncertainties of treatment Given desires for a child, physical burdens and costs of Doctors are sincere, but maybe not properly trained treatment, patients seek hope, and providers must frame on how emotionally fragile a woman is going through and manage expectations. Yet clinicians face quandaries this. Doctors should never say, “Maybe there’s regarding how to respond to the inherent uncertainties something wrong with your eggs.” It could be true, and complex emotions involved – how to frame ambigu- but patients don’t always need to hear the worst case ities about possible outcomes - and may come across ei- scenario. I may not be able to handle it right now. ther as overly-optimistic (“hyping” their services) or Sometimes doctors are giving us too much credit: giving “reality checks”. Providers need to convey ad- “here are the options.” [PT#7]. equately to patients the relatively low success rate of IVF (to avoid giving patients overly high expectations of a Patients may see themselves as posing challenges for “take-home baby”), the possible psychiatric and other providers, but tended to feel that providers could none- side effects of fertility medications, and the emotional theless try to be more aware of these difficulties. difficulties of “losing a child” if a miscarriage occurs. Yet Klitzman BMC Women's Health (2018) 18:84 Page 7 of 12 patients may not want to hear, and may have had diffi- more direct assistance than providers may feel comfort- culty accepting this information. able giving. Patients may feel that doctors both are not entirely forthcoming and may not want to give, or prepare pa- I just try to give patients realistic expectations, so tients for, bad news. they’re not disappointed. I gave a “reality check” to a 43-year-old woman who hasn’t yet found Mr. Right, I wonder what they teach OB/GYNs about what to do and was trying to decide whether to use a sperm when it looks like a woman will miscarry. Each time, donor: “You’re 43. Even though you’ve never tried to it felt like the writing was on the wall, but nobody get pregnant before, these are your odds: just being told me that the yolk sacs on the ultrasound weren’t scientific about this, with one cycle of IVF and PGD, the right size, or that the heart rate at seven weeks without any reproductive or medical issues, there’s wasn’t what it should have been. We’re so numb; we only a 25% success rate. If you’re 43, those odds go hear part of that, but we weren’t told, “Brace down by an order of magnitude.” [MD#6]. yourselves. This is probably not going to go well.” Aren’t they supposed to tell you that they think you’re Providers can face a hard balance to avoid being either going to miscarry? Is that medically irresponsible to too definite or not definitive enough. “Reality checks” send a patient out waiting for a miscarriage? It seems may be appropriate, but be seen by patients as harsh, like unless the heartbeat has stopped, they don’t though certain patients may have unrealistic hopes. completely tell you. [PT#10]. The fact that considerable uncertainties exist concern- ing the outcomes of ART can also be hard for clini- Complex statistics, in particular, can be hard to grasp, cians to convey, and for patients to grasp. Some patients convey and apply for any one patient. Physicians may felt that doctors seemed too definitive in decisions and thus vary in how they communicate these odds to pa- predictions, and at times later ended up being wrong. As tients – what verbal descriptors and adjectives they one patient said, employ. There’s a lack of complete knowledge here, which is A lot of what I try to do is manage expectations. A lot very frustrating. There’s some science to it, but it’s not of providers use adjectives: high, low, moderate. That’s all science. It’s a little bit of hocus pocus. They wanted fine, but you’re not always on the same page. So using to trigger the cycle that led to me being pregnant with the absolute numbers is much more useful for patients. my daughter. I pushed back: “I think I should go Some IVF providers say: “This procedure is very likely another day. Maybe the eggs weren’t mature enough.” to be successful”– in their own universe, compared to The doctor called and said, “If you want to go another 47-year-old women who have had ten miscarriages. But day, go another day.” I said, “Should I? You’re the that may translate into only a 25% rate per cycle. It is doctor.” He said, “If you don’t go another day, and it likely to be successful for a woman with no infertility doesn’t work, you’re going to think that’s why. So I issues. [MD#6]. think you should just go another day.” He basically said: “This is an art and a science. It’s not just one of Patients generally seek not merely statistics, but ways of the other.” [PT#7]. interpreting and making sense of these numbers. Patients often have trouble figuring out how to apply to themselves Uncertainties can emerge, too because many patients the varied statistics on averages that physicians provide. have varying degrees of sub-infertility, rather than complete infertility per se, and can potentially become pregnant on Doctors have to use statistics, but sometimes I just their own but face diagnostically unclear medical impedi- want an honest opinion. Sometimes the doctors just ments. Many patients may feel, however, that providers are give you the statistics. I finally had to say, “What would insufficiently sensitive about these ambiguities. you do?” He told me, “If my daughter was going through this, this is what I would tell her to do.” It made The worst part is there’s some insensitivity in the me feel, “Okay, this is what I’mgoing to do”. [PT#9]. field. Nurses, embryologists, or the REIs, will say, “Maybe there’s something wrong with your eggs or Patients may feel that statistics alone are not “honest” sperm.” They did a sperm test on my husband and (i.e., straightforward), wanting instead a clear or defini- said, “Something is abnormal here. You need to redo tive answer of how to proceed. the test.” My husband hates doing sperm tests. So I Providers face tensions of exactly how helpful to be, said, “Just wait to the last minute on that.” The next and in what ways, since many patients may wish for month, I got pregnant on our own! [PT#7]. Klitzman BMC Women's Health (2018) 18:84 Page 8 of 12 Differing time frames present time, but remembering details of such past Physicians confront many competing stresses, and may interactions. not have enough time with patients. I don’t like when a doctor sits down and looks at my It would help if doctors gave a little bit more time to chart, trying to figure out who I am. Read my chart their patients, rather than just coming in, doing a before you come into the room! I have had doctors sonogram, and going out. That’s hard, because these who are really good at this: they have hundreds of doctors have to see a lot of patients. But these patients, and probably don’t remember, but they seem patients need some emotional understanding. [OP#4]. to. That’s comforting. [PT#7]. Doctors in a clinic may also rotate being on-call, which Providers’ specific individual characteristics and expe- can hamper continuity of care and disturb patients, but riences can shape their responses to these challenges. A be inevitable. Still, patients may feel frustrated, though variety of providers’ personal characteristics can be in- nevertheless understanding these limitations. volved, but are not always readily predicted by simple or obvious objective categories such as gender. I went to an office with five fertility doctors. The doctor I was referred to, whom I wanted to see, It’s personality-dependent. Some men very closely wasn’t always my doctor. So I didn’t feel any one watched what their wives have gone through, and can be person was in charge of my treatment. He came up compassionate and non-judgmental. But in general, I with the plan, but then the doctor on call that day think women are a little bit more patient and less judg- decided the next step. That was very difficult. [PT #5]. mental. Every woman has also had a period, and knows what that feels like. Yet that sometimes makes them The fact that patients must often pay all or much of more judgmental, because they tolerate their’sjustfine, the costs of treatment out-of-pocket exacerbates these and just don’t believe other women who are in agonizing tensions as well. pain. It’s more personality than anything else. [MD#15]. Factors involved in characteristics of individual clinics, Clinics and practices themselves also range in size and providers and patients institutional cultures in ways that affect perceptions of Institutional and professional characteristics of individual care and potential tensions between providers and pa- providers tients . Clinics vary in how they are organized, and The structure and logistics of clinics, care and profes- structure interactions with patients. sional roles can also create obstacles and pressures. The patient above, who complained about five doctors rotat- At some facilities, you feel like cattle. You’re just being ing in a clinic, added, herded through. That’swhat most facilities do. Yougo in for your blood work and sonogram and leave. The At a more private office, that wouldn’t have been the doctor reviews it after you’re gone. And they call you in case. But this office is supposedly one of the best in the afternoon. You never have any doctor-patient con- the state, and is five miles from my house. So it was tact until the transfer and the retrieval. [PT#7]. more realistic for me, but difficult. Still, I was very pleased with them. They were compassionate and Several interviewees suggested that larger, multi-doctor skilled. One doctor, in particular, would sit for two practices may seem less caring than smaller ones. As one hours if you needed, it, to go over every question you provider-patient who works in a small practice said, “In a had. [PT#5]. very small clinic, we give people individualized care. I’ve had patients who were initially in a larger clinic, and felt Despite the frustrations she encountered, she ended up like a number.” [OP#10]. giving birth to twins, and looked back favorably on the ex- Many patients concur, but may not always be wholly perience overall. Depending in part on their own personal accurate and objective. experiences, patients may be able to understand and ap- preciate the challenges that providers confront. Multi-doctor practices are not there for the patient. Too many hands are in the pot. Too many people Personal characteristics of individual providers saying, “I see it going this way.” They don’t stick to Patients often see providers as varying widely in specific the plan. With one-doctor offices, the doctor, even behaviors and characteristics regarding interactions, though you don’t get to see him all the time, makes such as not only communicating effectively at the himself available for you, and is more there for the Klitzman BMC Women's Health (2018) 18:84 Page 9 of 12 patient: “It’s breaking my heart to see what you’ve patients can’t accept that bad things just happen. gone through, and what you’ve spent when you should They blame the doctors. Sometimes it is the doctor’s have just come to me from the beginning.” [PT#6]. fault, but not always. [OP#4]. Yet the doctor at this last clinic, though expressing Fears of lawsuits can further impede communication. empathy, may also be somewhat biased in suggesting (“Physicians may fear potential lawsuits. But I think if that his treatment will be better than that of the patient’s they show a humane approach, they’re less likely to be prior physicians. sued.” [OP#4]). Poor communication between doctors and patients Characteristics of individual patients may result from mutual reticence. As suggested above, medical, social, psychological, and financial characteristics of individual patients can also The doctor may be reluctant to reach out to patients, affect these tensions and experiences. Patients can vary too. Some patients can be very angry that it didn’t in the type and strength of their emotional reactions, work, despite the doctor having very clearly told them and needs for psychosocial support, related in part to their likelihood of success. [OP #4]. the amount of treatment failure they have had, and their age and responses, which will affect how much oppor- Alternatively, when confronting such treatment fail- tunity they have to undergo additional IVF. ures, many providers try to remain communicative, which can help maintain or improve PCC. Dynamic tensions These differences can fuel dynamic tensions that become Families get frustrated when they don’t get answers, exacerbated when, for instance, treatments fail. When but doctors try their best. I’m not asking doctors to be interventions do not succeed, patients may feel disap- friends, but to be available. Many call back, give the pointed and angry and blame doctors, who themselves patient as much information as they can, and will do may feel frustrated, helpless and/or guilty, and thus their best to help the family, and want to know withdraw or distance themselves. Doctors may have updates: Did the PGD work? Was it successful? And trouble discussing failures with patients, creating a vi- they’re so happy when the patient has a healthy baby. cious cycle. Many patients may understand and accept [OP #7]. these failures (“A great reward is those people who in the end say, ‘We know we tried our best’” [MD#8]); but Several patients and providers suggested, in particular, others have paid relatively large amounts of money, that explanations of why communication is at times dif- undergone physical burdens, and had high hopes dashed, ficult can potentially help. and feel disappointed, shame, and anger. When strains, difficulties or failure occur in the treatment, patients can One receptionist was really stressed out, having an easily feel stressed and frustrated. emergency situation going on, so she cut me off short. But as soon as she said, “We have an emergency. I Women feel like pariahs if the cycle hasn’tworked, or need to call you back,” I totally understood. I know they have an early miscarriage. Nobody really talks to how emergencies go. But the other receptionists have them. Nurses are beginning to do that more. But all been good. [MD#15]. doctors should reach out to the patient. It goes a long way to hear from the doctor – that the doctor is very busy, but actually cares. These women feel like failures, Discussion and that the doctor isn’t going to be very interested in These data, the first to examine why IVF clinicians have them – because they failed, and haven’tcontributed difficulty communicating and interacting with patients, positively to their doctor’s success rate. [OP#4]. suggest that five sets of differences between providers and patients, and several characteristics of individual cli- Clinicians may not respond well to these failures, and nicians and patients can create dynamic tensions that may distance themselves, worsening tensions. impede communication and relationships. Providers and patients frequently respond differently to the medical is- The doctors may not want to reach out and then be sues involved, including high levels of uncertainty and blamed. Doctors can feel guilty that they failed, too. complex statistics. Success rates are increasing, but still After pregnancy losses, a lot of the doctors feel very generally below 50%, particularly for older women [32]. sad and guilty, even if there was no negligence or Consequently, patients often have overly high expecta- malpractice. And we’re a litigious society. A lot of tions of success and definitive answers. Providers may Klitzman BMC Women's Health (2018) 18:84 Page 10 of 12 either “hype” their success to attract patients, or offer fact that in fertility treatment, patients seek and find accept- reality checks – yet both of these approaches can gener- able only one acceptable outcome (a “take home baby”)ra- ate tensions with patients. Patient can feel high levels of ther than partial success (e.g., partial symptomatic relief of emotional distress, partly since they seek only one out- a chronic disease). Many patients pay all or significant pro- come (a “take home baby”), and view partial success portions of treatment costs themselves, which may lead (e.g., a pregnancy that ends in a miscarriage) as failure, them to seek “the best” possible care, heightening desires while providers are very aware that most IVF cycles fail. for “good bedside manner.” In a competitive, entrepreneur- Patient complaints about provider interactions may ial market, physicians may also overly “hype” their success. not all be wholly accurate, but reflect these individuals’ Issues of sexual behavior, reproduction and infertility are feelings, and are thus important to note. Whether and to also extremely sensitive, and traditionally taboo to discuss what degree these physicians are in fact having difficul- [37], heightening needs for sensitivity. These data thus ties communicating and interacting with patients is un- highlight the impact of contrasts in patients’ and providers’ clear, but the fact that patients perceive such problems is particular roles in these medical, emotional, temporal, fi- critical, since these perceptions can affect whether and nancial and institutional contexts. how patients pursue treatment. Patients who end up with a child may ultimately look While prior research has shown that patients often feel back at these experiences more favorably, but most cy- disappointed by communication and relationships with cles do not end up producing a baby [23]. Patients com- their providers [2–7], the present data suggest that sev- monly undergo treatment over several years, filled with eral different specific barriers and factors exist, involving disappointments and struggles with costs and interven- dynamic processes. While the past literature has sug- tion failures, and perceive deficits in doctor-patient com- gested that clinics should address their organization, and munication. Even patients who ultimately succeed and have more frequent appointments and better quality of look back more favorably on the experience as a whole information for patients [2], the present data suggest may perceive significant gaps in provider-patient rela- several additional specific obstacles, details and aspects tionships that hamper care. Several patients had had one of potential improvements that have not been examined child using ARTs and were now trying to have a second and should be addressed at several levels. Statistical and child. emotional uncertainties and complexities inherent in in- These data have critical implications for future prac- fertility treatment, and characteristics of particular pro- tice, research, guidelines and education. For practice, viders, clinics, and patients can impede doctor-patient providers can address in several ways patients’ percep- communication and relationships. The fact that several tions of gaps in communication and relationships. Par- physicians described how they understood patients’ ticular aspects of clinics, including interactions with not needs and perceptions only after becoming infertility pa- only physicians but other providers as well, can shape tients themselves highlights needs to explore and articu- the structure and organization of clinics, and can be im- late more fully these patient perspectives – the proved. These data highlight how interactions, including components, effects and importance of these viewpoints. seemingly small casual comments, can shape patients’ Complex dynamic tensions and processes are involved. perceptions that their care is lacking. Nuanced ap- In general, physicians have been found to have difficulty proaches are needed to grasp how each group sees and coping with treatment failures. For instance, obstetri- responds to the other. cians have been found to feel guilty when patients have These data suggest, too, that physicians can involve a stillbirth [33]; and physicians frequently feel guilty mental health providers and non-physician staff more to about medical errors, which can make these mistakes benefit patients confronting treatment failures and other difficult to disclose to patients [34]. Yet physician stresses, though these staff, too, need to be as aware and non-communication can antagonize patients more than sensitive as possible to these issues. Many patients ap- these doctors realize, aggravating patient frustration and pear willing to understand these impediments, but pro- ultimately harming the profession in the long run. viders may communicate about these obstacles and Though pain is inherently hard to communicate to reasons poorly or not at all, fostering frustration. Clini- others [35, 36], physicians can become more aware of cians may thus need to communicate better about these this difficulty itself. Patients may also not fully appreciate impediments, sensitively manage expectations about care, the pressures and stressors that providers themselves and address these processes and professional and personal confront. Hence, enhanced patient appreciation of these obstacles at multiple levels. More attention to these issues clinician challenges could also potentially improve and education by providers about these inherent uncer- provider-patient interactions. tainties and realistic odds of treatment success are critical. The current data suggest how the contexts of fertility care Clinicians should realize that patients may have overly op- can also strongly affect several factors involved – e.g., the timistic hopes, as well as difficulties hearing and grasping Klitzman BMC Women's Health (2018) 18:84 Page 11 of 12 that the odds of success are overall less than 50% per Additional file cycle, and that uncertainties can remain. Additional file 1: Semi-Structured Interview Questionnaire (Sample These data suggest several questions for future re- Questions). (DOCX 15 kb) search concerning how providers respond to ongoing treatment failures, how often clinicians withdraw, in Abbreviations what ways, and with what effect, what percentage of pa- ART: Assisted reproductive technology; CDC: Center for Disease Control and tients have unrealistic expectations, how, and to what Prevention; IUI: Intrauterine insemination; IVF: In-vitro fertilization; MD: Medical doctor; OB/GYN: Obstetrician/gynecologist; OP: Other provider; degree. Future research can also investigate more fully PCC: Patient-centered care; PGD: Pre-implantation genetic diagnosis; the experiences of clinicians who become infertility PT: Patient; REI: Reproductive endocrinology and infertility specialist; patients themselves, to assess more thoroughly what SART: Society for Assisted Reproductive Technology specifically they now understand that they previously Acknowledgements did not, and what barriers stymied this earlier The author would like to thank Daniel Marcus-Toll and Bela Fishbeyn for appreciation. their assistance with data analysis, and Kristina Khanh-Thy Hosi, Sarah These data also have key implications for education, Kiskadden-Bechtel, Charlene R. Sathi, Alexa A. Woodward, and especially Patricia Contino, for their assistance with the preparation of the manuscript. highlighting needs to train physicians, other providers, patients, and the public to address more fully the emo- Funding tional complexities with which these patients grapple, Funding for this paper is supported by grant number UL1 RR024156 from and needs to assist patients in developing realistic expec- the National Center for Research Resources (NCRR), The Greenwall Foundation, and the John Simon Guggenheim Memorial Foundation. These tations. Though providers may fear being sued by pa- funders were not involved in any way in the design of the study, collection, tients for infertility treatment failure, patients in the US analysis, interpretation of the data or writing of the manuscript. and elsewhere have sued infertility providers for various Availability of data and materials other reasons (e.g., accidental use of another patient’s The data analyzed in the current study are available from the author on gametes, loss or destruction of embryos, and birth of an reasonable request. “extra” child), but do not appear to have sued for failure to become pregnant [38–43]. Increased awareness of Disclaimer The opinions expressed here are the authors’ and do not reflect the policies these facts can potentially help providers. and positions of the National Institutes of Health, the US Public Health For policy, professional organizations can develop Service, or the US Department of Health and Human Services. guidelines that encourage providers to avoid hype, and Author’s contributions help patients develop realistic expectations. SART and The author read and approved the final manuscript. CDC could also alter their requirements of what statistics clinics report, in order to aid patients more, providing Ethics approval and consent to participate more user-friendly breakdowns of data to assist patients in Since interviews were all conducted by phone, rather than in person, an information sheet was sent to all participants who then gave verbal consent obtaining realistic rather than “hyped” understandings of to participate. The Columbia University Department of Psychiatry Institutional the odds of success – e.g., by reporting success rates per Review Board approved the study and all procedures involved. embryo transferred, rather than only per IVF cycle (which Competing interests can be higher if two or more embryos are transferred). The author declares that he has no competing interests. These data have several potential imitations. The sam- ple size is adequate for qualitative research to reveal the Publisher’sNote themes and issues that emerge, but not for statistical Springer Nature remains neutral with regard to jurisdictional claims in analyses of how different groups (e.g. physicians vs. pa- published maps and institutional affiliations. tients) may vary. Patients complain here about both pri- Received: 13 October 2016 Accepted: 21 May 2018 vate and hospital-based clinics, yet generally do not have sufficient experiences with both to generalize validly be- tween them. 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BMC Women's HealthSpringer Journals

Published: Jun 5, 2018

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