“I fought my entire way”: Experiences of declining maternity care services in British Columbia

Background The 2016 WHO Standards for improving quality of maternal and newborn care in health facilities established patient experience of care as a core indicator of quality. Global health experts have described loss of autonomy and disrespect as mistreatment. Risk of disrespect and abuse is higher when patient and care provider opinions differ, but little is known about service users experiences when declining aspects of their maternity care. Methods To address this gap, we present a qualitative content analysis of 1540 written accounts from 892 service users declining or refusing care options throughout childbearing with a large, geographically representative sample (2900) of childbearing women in British Columbia who participated in an online survey with open-ended questions eliciting care experiences. Findings Four themes are presented: 1) Contentious interactions: “I fought my entire way”, describing interactions as fraught with tension and recounting stories of “fighting” for the right to refuse a procedure/intervention; 2) Knowledge as control or as power: “like I was a dim girl”, both for providers as keepers of medical knowledge and for clients when they felt knowledgeable about procedures/interventions; 3) Morbid threats: “do you want your baby to die?”, coercion or extreme pressure from providers when clients declined interventions; 4) Compliance as valued: “to be a ‘good client’”, recounting compliance or obedience to medical staff recommendations as valuable social capital but suppressing desire to ask questions or decline care. Conclusion We conclude that in situations where a pregnant person declines recommended treatment, or requests treatment that a care provider does not support, tension and strife may ensue. These situations deprioritize and decenter a woman’s autonomy and preferences, leading care providers and the culture of care away from the principles of respect and person-centred care.

I would My partner would take the lead My partner and I would make the decision together My parents/elders would lead the decisions (please specify: father, mother, father or mother in law) __________________________ My partner and I would make the decisions together with our elders __________________________ Other, please explain: __________________________ 4. Below are factors some women consider when choosing a maternity care provider. Please tell us how much of a factor each would be in your choice of a maternity care provider.
The maternity care provider...

Major factor
Minor factor Not a factor The next two sections collect information about how your maternity care either met your needs and/or did not meet your needs and expectations. Please choose one or two of your pregnancy or birth experiences to describe. You will be able to describe your experiences with more than one care provider for the same pregnancy.
If you had a pregnancy that resulted in a miscarriage, stillbirth or neonatal loss, please select one of the following: d. I do not want to share any of my experience with this pregnancy a. I would like to answer ALL questions about this pregnancy c. I would like to answer questions about pregnancy, labour and birth ONLY during this pregnancy b. I would like to answer questions about decision making ONLY during this pregnancy 1. Who was your care provider during your pregnancy?
Please check all that apply. You will have an opportunity to tell us your experiences with up to 3 providers for one pregnancy later on in the survey.
Family Optional ______________________ 5. At any time did you refuse to accept any care that a nurse, doctor or midwife offered to you or your baby? "Care" includes anything that might be done or given to either of you or that you were asked to do (take a test, treatment, medicine, etc.).

Yes
No Decline to answer N/A Please tell us what you refused, why you refused it, how the staff reacted, and how you felt about it. We would appreciate as much detail as you would care to provide. _____________________________________________________________ _____________________________________________________________ _____________________________________________________________ 5. During this pregnancy, how many times did you expect to see your midwife before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your family doctor before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your obstetrician before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your health centre nurse before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your maternity care provider before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 6. How much time, on average, did you have at prenatal appointments? Optional ______________________ 5. At any time did you refuse to accept any care that a nurse, doctor or midwife offered to you or your baby? "Care" includes anything that might be done or given to either of you or that you were asked to do (take a test, treatment, medicine, etc.).

Yes
No Decline to answer Please tell us what you refused, why you refused it, how the staff reacted, and how you felt about it. We would appreciate as much detail as you would care to provide. _____________________________________________________________ _____________________________________________________________ _____________________________________________________________ 6. During this pregnancy, how many times do you expect to see your midwife before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your family doctor before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your obstetrician before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your health centre nurse before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your maternity care provider before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 7. How much time, on average, did you have at prenatal appointments? Optional ______________________ 5. At any time did you refuse to accept any care that a nurse, doctor or midwife offered to you or your baby? "Care" includes anything that might be done or given to either of you or that you were asked to do (take a test, treatment, medicine, etc.).

Yes
No Decline to answer Please tell us what you refused, why you refused it, how the staff reacted, and how you felt about it. We would appreciate as much detail as you would care to provide. _____________________________________________________________ _____________________________________________________________ _____________________________________________________________ 6. During this pregnancy, how many times do you expect to see your midwife before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your family doctor before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your obstetrician before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your health centre nurse before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your maternity care provider before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 7. How much time, on average, did you have at prenatal appointments? Choose the reason that best applies to your situation: • A care provider was concerned about the size of the baby • A care provider was concerned that I was "overdue" • My water had broken and there was fear of infection • A care provider was concerned that the amniotic fluid around the baby was low • A care provider was concerned that the baby was not doing well and needed to be born soon • I had a health problem that required quick delivery of the baby • I wanted to get the pregnancy over with • I wanted to control the timing for work or other personal reasons • I wanted to give birth with a specific provider • Baby was full term, it was close to my due date • Some other reason Whose idea was it for you to have a cesarean?
Please select the choice that best describes whose idea it was: Mine, I decided I wanted the cesarean before I went into labour Mine, I asked for the cesarean while I was in labour My maternity care provider recommended a cesarean before I went into labour My maternity care provider recommended a cesarean while I was in labour Other __________________________ What was the reason for the cesarean?
Choose the reason that best applies to your situation: • There was no medical reason • I had had a prior cesarean • Labour was taking too long • Baby was in the wrong position • The fetal monitor showed the baby was having problems during labour • My maternity care provider worried that the baby was too big • There was a problem with the placenta Optional ______________________ 5. At any time did you refuse to accept any care that a nurse, doctor or midwife offered to you or your baby? "Care" includes anything that might be done or given to either of you or that you were asked to do (take a test, treatment, medicine, etc.).

Yes
No Decline to answer N/A Please tell us what you refused, why you refused it, how the staff reacted, and how you felt about it. We would appreciate as much detail as you would care to provide. _____________________________________________________________ _____________________________________________________________ _____________________________________________________________ 5. During this pregnancy, how many times did you expect to see your midwife before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your family doctor before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your obstetrician before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your health centre nurse before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 5. During this pregnancy, how many times did you expect to see your maternity care provider before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure N/A 6. How much time, on average, did you have at prenatal appointments? Optional ______________________ 5. At any time did you refuse to accept any care that a nurse, doctor or midwife offered to you or your baby? "Care" includes anything that might be done or given to either of you or that you were asked to do (take a test, treatment, medicine, etc.).

Yes
No Decline to answer Please tell us what you refused, why you refused it, how the staff reacted, and how you felt about it. We would appreciate as much detail as you would care to provide. _____________________________________________________________ _____________________________________________________________ _____________________________________________________________ 5. During this pregnancy, how many times do you expect to see your midwife before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 5. During this pregnancy, how many times do you expect to see your family doctor before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 5. During this pregnancy, how many times do you expect to see your obstetrician before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 5. During this pregnancy, how many times do you expect to see your health centre nurse before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 5. During this pregnancy, how many times do you expect to see your maternity care provider before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. How much time, on average, did you have at prenatal appointments? Optional ______________________ 5. At any time did you refuse to accept any care that a nurse, doctor or midwife offered to you or your baby? "Care" includes anything that might be done or given to either of you or that you were asked to do (take a test, treatment, medicine, etc.).

Yes
No Decline to answer Please tell us what you refused, why you refused it, how the staff reacted, and how you felt about it. We would appreciate as much detail as you would care to provide. _____________________________________________________________ _____________________________________________________________ _____________________________________________________________ 6. During this pregnancy, how many times do you expect to see your midwife before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your family doctor before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your obstetrician before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your health centre nurse before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 6. During this pregnancy, how many times do you expect to see your maternity care provider before birth? 4 or more Less than 4 (Please explain) __________________________ Unsure 7. How much time, on average, did you have at prenatal appointments?