Empowerment and Self Advocacy by Elizabeth Redmond
Bringing forth life is arguably one of the most vulnerable states a human being can be in and demands the utmost reverence. The impacts of this experience create a butterfly effect for the trajectory of the newly born child and hence humanity as a whole. It is my belief that if we want to create a strong, empowered and resilient society, we need to lay the proper foundation for these ideals to incarnate. What that means in a practical sense, is that pregnant and birthing people need to be in truly respectful and collaborative relationships with the people they are entrusting to take care of them and their baby.
I am a midwife and massage therapist. Currently, the majority of my professional life is providing bodywork for pregnant and postpartum people, as well as babies. One of my specialties is c-section scar rehabilitation. Not surprisingly, many of these clients feel traumatized about their birth. It never seems to be about the c-section itself, but rather the course of events that lead to that outcome. Within their stories are common themes of neglect, lack of communication, explanations, or any sort of bi-directional decision-making.
I find that a large portion of my job has become sharing information with people about where and how to report their dissatisfaction, as well as the importance of doing so. In the bureaucratic public health system "if there's no paper trail, it didn't happen", and more importantly, if their doctor acted like this towards them, this is very likely an ongoing pattern that has or will affect many others.
This document is inspired by the stories I’ve heard from clients surrounding their experiences in engaging with various health care providers and has been created as an educational tool for people to better understand what their medical rights are, what types of conversations, information and treatment they should expect from their care providers, and links to meaningful resources for individuals who believe that they have been neglected, coerced, mismanaged or disrespected by their primary health care provider. The information is as up-to-date and as Ontario and Canadian-specific as possible. It is also my hope that this document facilitates holding health care providers to account and closes the gap between what regulatory professional guidelines state is appropriate ethical behaviour versus what the public is actually experiencing.
This document is to be freely copied and shared by all who desire to do so.
Historically, conventional medicine has been a paternalistic practice, meaning people seek out a doctor and are expected to blindly follow whatever treatment or procedure that is recommended to them based on the antiquated notion that “doctor knows best”. This creates a dynamic where the doctor holds all the knowledge and power, and the patient is at their mercy. This approach would not be problematic if we were living in an ideal world where we could be confident that our well-being is held as the highest priority when we seek out treatment from a health care provider, and that their decisions are untainted by other factors such as liability, convenience, institutional policies or pressures, financial incentives, ego, etc….
Sadly, the world we live in is layered and complex and there have been numerous incidents throughout the past century where harmful medical policies, pharmacological drugs, or studies have been carried out that have eroded our collective trust in medical authorities. What’s more, these things continue to happen and often the perpetrators of these acts do not suffer any meaningful consequences for their actions.
Presently, we are in a transition period where we are globally shifting from a hierarchical model of care where the health care provider decides what will be done and informs the patient of the plan, to a model where the health care provider offers education and information on the various options open to the patient, recommends a course of action, and supports the patient’s decision regarding what is right for them. This represents a radical collective shift in perspective, like how it was once believed that the sun revolved around the earth until Copernicus discovered that in fact, the earth rotates around the Sun. The pregnant person is the Sun and it’s our job to literally centre them and put their comfort, desires, safety and wishes at the forefront of their care.
What are your medical rights and the care provider's responsibilities?
*From a legal standpoint every adult of sound mind has the right to determine what shall be done with their own body [1].
During pregnancy and labour, the life carrier will have to make several decisions such as whether they want a midwife or doctor, will they participate in genetic testing, where will they choose to give birth, will they have an induction, etc... These conversations should contain specific elements to ensure that the client is receiving all the information necessary to make an informed choice. These elements include the following:
Provide information about what is the treatment they are proposing (including success and failure rates and whether the procedure is elective [2])
Disclose what are the expected benefits
Disclose what are the risks and side effects of the proposed treatment
What are the alternatives?
What are the likely consequences of not having the treatment or if you decide to do nothing?
Furthermore, you should receive broad information on the subject, as well as specific information based on your particular case. You are entitled to ask questions and dialogue with your healthcare provider, including requesting more information, especially in the form of handouts or resources that you can take home and reference as part of your decision-making process. You have the right to take the time you need to make a decision (unless in an acute medical emergency), and it’s your right to change your mind. You don’t need to feel locked in because you’ve already had the conversation. Informed choice is an ongoing process.
*Here is a link to the College of Physicians and Surgeons of Ontario website that contains the written guidelines for doctors obtaining consent for treatments if you’d like to see for yourself:
https://www.cpso.on.ca/Physicians/Policies-Guidance/Policies/Consent-to-...
Care during pregnancy and labour is unique among medical specialties because there is so much grey area in comparison to other types of medicine. Largely, this is due to the fact that this is a time when people are seeking medical help, or going to the hospital, but are not ill or injured. Rather, they are going through a normal physiological process that includes countless variables or deviations on the path, many that will ultimately lead to the spontaneous vaginal birth of a healthy baby. “Because of the potential inability to determine with certainty when a situation will cause harm to the fetus, as well as the potential inability to guarantee that the pregnant woman will not be harmed by the medical intervention itself, a balance of potential outcomes…should be presented” [3]. What this statement means is that often interventions are recommended to avoid the potential of an undesirable outcome for the baby or life carrier, even if the chance or the degree of potential harm is small or on a spectrum. That said, the proposed interventions may or may not work and also contain potential risks to the baby or birthing person, so it’s a fallacy to think “I don’t want to take any risk with my pregnancy”, because you will be doing so one way or the other. Given this fact, it is even more important for health care providers to properly inform and educate patients prenatally so that they can make choices that feel right for them, as they will be the ones living with any consequences that may occur.
It is important to relate conversations about proposed treatments to the cultural context in which we live. Many of us were raised to be compliant and were taught that going along with what people want or expect from us makes us good or likeable. This behaviour, or set of patterns, is often done subconsciously and at the expense of our needs and desires. This phenomenon in psychology is known as ‘good girl syndrome”. No one is immune to it. It is a pervasive condition that affects even those of us who generally consider ourselves assertive or resistant to authoritative pressures.
This point is worth examining for a few reasons; the primary one being that coercion from a health care provider to choose a certain course of action isn’t always someone telling you that you must choose X or they will refuse to attend your birth. Often it manifests as the care provider exaggerating risk estimates of a treatment the client is interested in (such as with a trial of labour after a cesarean), or withholding risks of a treatment they are suggesting you do. It can even be as subtle as you perceiving that they have a strong preference for you to choose X, and part of you is worried that if you don’t follow their suggested path they may treat you poorly or passive-aggressively moving forward.
Additionally, you are carrying a child and not only are concerned with your own well-being but also have the desire to protect your baby. Essentially, we’re taught that doctors are the authority of our health and well-being, and simultaneously that we as patients are responsible for the relationship. In actuality, we are the authorities of our own experiences and the doctor is responsible for establishing and maintaining a professional relationship.
As such, obstetric regulatory bodies and scholars state that when clinicians are faced with a person who decides to accept additional risk and go against their recommendations, two of the things they should do during this situation are “reassure her that her wishes will be respected” [4] and “reassure her that she will continue to receive courteous, professional care” [5], as informed consent only occurs alongside informed refusal [6]. Similar to how our eyes would not be able to distinguish light if there was no darkness. This concept only exists in relation to the other and our experience of the two.
More often than not, patients and primary health care providers see eye to eye and agree on a proposed treatment or course of action. In the rare case that you would like to decline a recommended treatment, the general process is that your care provider will advise you against the “risky” choice, perhaps have a secondary practitioner counsel you or give their opinion on the matter, and finally record your decision in your medical notes. Sometimes there is a separate document you will be asked to sign. It’s often at this point that the conscientious objector will start to doubt their decision to go against the grain. But remember, this paper signing is merely a part of the bureaucratic process and does not in or of itself indicate you are making some wildly inappropriate choice.
Here is a copy of what this doc looks like to familiarize yourself with the Informed Refusal Document
Are you receiving appropriate care?
At this point, you may be thoughtfully stroking your chin and pondering to yourself “Am I receiving sub-par care?”
Here are some signs that suggest you are not receiving the care you deserve:
Your appointments are 5 minutes long (meaningful conversations take time)
Your care provider doesn’t or rarely makes eye contact with you
You often feel rushed and that there’s not enough time to discuss your concerns
You do not receive handouts or resources regarding topics you are supposed to make decisions on such as the gestational diabetes test, the GBS test, induction etc…
Your care provider has never inquired as to what type of birth you would like to have or what your top birthing priorities are; for example, minimal medical interventions or a high desire to avoid pain in labour
You straight up don’t feel like your health care provider cares about you or has your back
Perhaps some of the above statements ring true for you. You may be thinking “Isn’t this type of behaviour normal?”, or “I had to wait so long to get an OB/Midwife, I don’t know if it’s worth it to bring up my concerns…I don’t want to have to find another one and risk no care at all?” These thoughts are totally understandable. People want a harmonious and smooth relationship with their primary health care provider and may anticipate consequences of “rocking the boat” if they do decide to speak up. Respectively, most health care providers strive to have a solid and respectful relationship with those under their care.
Remember, Doctors and Midwives are people too. Contrary to the cookie-cutter model they are pressured to mould themselves into, the reality is they operate within a large spectrum of personalities and philosophies, like all other professions. You could present three different Midwives or OBs with the same case and have three different approaches to managing it. Like on a cooking show where all the contestants are given the same ingredients and they all create different dishes with them.
Sometimes there are just two people who rub each other the wrong way, or who are poorly suited to work with each other. Fortunately, you do have options. Your health care provider has a duty of care toward you and cannot abandon you. In an extreme case, where the patient’s and care provider’s differences can not be worked out, it is their responsibility to find you an adequate replacement.
What can you do if you feel you are not receiving adequate care?
The first thing to do is share your concerns with your healthcare provider. I realize that this is easier said than done and in practice can be quite uncomfortable. My suggestion is to reflect specifically on what you would like to be receiving that you are not getting so that your concern is clearly linked to a proposed solution. For example, you might say, “I find that the length of our appointments too short to properly discuss important decisions that I need to make surrounding my care”, or “It always seems like you’re in a rush to get me out of the door so you can attend to something more important. I’m looking for a care provider who gives me their undivided attention when I’m with them.” Or, “I would like some educational resources I can take home with me so that I can reflect on our discussion on a trail of labour after a cesarean.” Best case scenario, your health care provider hears your concerns and comes up with a plan or satisfactory solution.
Let’s say you have brought up your concerns with your health care provider and they just brush them off or are not willing to alter their behaviour in any way to accommodate your concerns. Or perhaps you feel too afraid to speak to them directly. In either case, you can contact the College of Physicians and Surgeons of Ontario or the College of Midwives of Ontario. They are third-party regulatory bodies that license and regulate all physicians and Midwives in Ontario. They are there to protect the public’s interests and are the appropriate people to make a complaint to. Although you are contacting these Colleges to make a complaint, often you will speak with someone first who will listen to your concerns and act as a bridge between you and your care provider to resolve the problem before it escalates into an official complaint. The College of Physicians and Surgeons of Ontario has a 98% rate of returning calls within one business day [7]. The College of Midwives of Ontario responds usually within 2 business days and the midwife will receive notice of the complaint and a copy of it within 14 business days [8].
If your concern is not about a specific practitioner but rather with a particular institution such as a hospital, long term care facility or clinic, you can contact the patient ombudsman. This is an independent organization established by the provincial government designed to help resolve complaints from patients, residents and caregivers about their experiences in Ontario’s medical institutions. They work toward individual resolutions rather than systemic issues.
Systemic change can take a painstakingly long time to achieve and the process can be frustrating. I hope that in the meantime this guide serves as a helpful stopgap for pregnant people. The old top-down model is baked into every facet of the healthcare system from the selection process of determining who gets to be a doctor or midwife, to the way hospitals and clinics are structured and the actual medical devices used in healthcare facilities. We don’t need more studies, reports or investigations on this topic. We need actionable projects, workshops and support for OB/GYNs that will assist them to embody what the scholars and professional regulatory bodies have already determined is appropriate care. The time has come to stop treating pregnant and labouring people like they are making some cameo appearance on a medical drama starring a courageous doctor or midwife and recognize that they are the star of the show and we are the supporting cast members.
References
1 & 2 von Tigerstrom, Barbara. (2001) ‘Informed Consent for Treatment: a Review of the Legal Requirements’, Journal SOCG, Volume 23, Issue 10, 951-956 in-text citation pg 951
3 & 4 The American College of Obstetricians and Gynecologists. (June 2016) ‘Refusal of Medically Recommended Treatment During Pregnancy’, COMMITTEE OPINION, number 66 in-text citation pg 4
5 Kotaska A. Informed consent and refusal in obstetrics: A practical ethical guide. Birth. 2017;00:1–5. https://doi.org/10.1111/birt.12281 in-text citation pg 3
6 Hayes-Klein, Hermine. (2016) ‘Informed Consent in Obstetrics’, presentation at Cedars-Sinai Medical Center, Los Angeles, available https://www.facebook.com/watch/live/?ref=watch_permalink&v=1021012349242... video citation 23:00 - 23:04
7 College of Physicians and Surgeons of Ontario (2023) ‘CPSO 2023 annual report’, available https://www.cpso.on.ca/en/News/Publications/Annual-Report in-text citation pg 8
8 College of Midwives of Ontario ‘Complaints and Concerns About a Midwife’, available https://cmo.on.ca/clients-and-the-public/complaints-and-concerns/ in-text citation under “complaint process” tab