Patient advocacy is intrinsically interwoven through our mission and primary aim of supporting voiding cystourethrogram (VCUG) survivors here at Unsilenced.
What Is Patient Advocacy?
Patient advocacy is a process in healthcare concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, concerned with healthcare standards or with one specific group of disorders. Patient advocacy includes both having empathy for patients and protecting them from harm.
An important aspect of patient advocacy is protecting patient rights, which can look different in different geographical areas. Here in Canada, we have the Canadian Patient's Bill of Rights (Bill C-261) which was passed in 2001 and includes a number of patient rights, including the right to be fully informed of one's medical condition, the right to be advised on the treatment options available, the right to be involved in treatment decisions, the right to receive respectful, considerate, and compassionate care, and many more. [Full list here]
What Does Patient Advocacy Aim to Achieve?
The general goal of patient advocacy is to provide patients and caregivers with the necessary support and information so that these individuals can make their own fully informed decisions about next steps in care.
Exploring What It Means to Be a Patient Advocate
There are many dimensions to patient advocacy. In protecting patients' safety and quality of care, it is essential that interpersonal relationships with patients are built and patients are educated on their conditions and the care they are receiving. It has been historically documented in research that the more a patient knows about every aspect of their condition, including how the doctor arrived at a certain diagnosis, the doctor's reasoning for prescribing a certain treatment, as well as differential diagnoses and alternative treatments, the more likely they are to comply with treatment, respond well to treatment, be proactive about managing their condition, and ultimately the more healthy they will become.
Another integral part of patient advocacy as a healthcare professional is being able to see things from the patient's perspective. This is especially important for vulnerable populations, such as children, individuals with disabilities, racialized individuals, women, members of the LGBTQ+ community, and more. It's important to note that before one can even begin to attempt to see through the perspective of an individual in these groups, they must be educated and informed on the issues individuals who are a part of these groups face. Most importantly, in order to act as the patient's advocate, either as a healthcare professional or as a third party, you must give the patient space to share their perspective and experiences and address them through that lens, create an understanding, validating, and safe environment, and be attentive enough to the patient to detect when they are uncomfortable.
Acting as the patient's voice is another aspect of patient advocacy. This can take a variety of forms, including translating medical jargon, helping with decision-making when it comes to the patient's care, proposing alternatives, explaining limitations, raising issues to the physician on the patient's behalf, and more.
Applying this to VCUG survivors, many of us choose to bring a loved one to medical appointments who can be an advocate for us in case our medical trauma/PTSD causes us to shut down and become nonverbal.
The Doctor-Patient Power Dynamic
The doctor-patient power dynamic exists due to gaps in knowledge between the two parties and a doctor's ability to inform care (i.e., provide that knowledge and diagnose & treat conditions).
An imbalance of power between doctors and patients is exacerbated for the aforementioned vulnerable groups. In a place where an uneven power balance already exists, in the situation of vulnerable populations, the gap in power is widened and disparities are more likely to transpire.
Prior to the 21st century and the rise of the internet, the interaction between doctors and patients was very simple. Doctors ordered, patients complied. At this time, the public had no other choice but to trust physicians because knowledge about their conditions and the ways in which it can possibly be managed or treated was nowhere near widely accessible.
In modern times, patients are more hesitant to just comply with the first option offered by physicians. We can be thankful for this because physicians are human just like the rest of us, and they too can make mistakes, which unfortunately can have grave and life-altering consequences. In the age of the internet, every person who can access Google and social media has a wealth of information at their fingertips. Of course, this does not come without pitfalls such as misinformation.
However, we are no longer left in the dark with no choice but to blindly follow the guidance of a single doctor. We can take steps to do our own research on what we might be struggling with and what might help us, which is huge. This means that the knowledge gap between the patient and the doctor is slowly shrinking, and as patients gain more power over their own care, you might notice that some doctors get frustrated with patients' use of "Dr, Google" and highly discourage it.
I have to wonder: why? If the patient is misinformed about something, explain to them where they may have gotten something wrong. This information should be shared anyways to fulfill the right of patients to be fully informed. Why are these types of doctors frustrated that patients are increasingly becoming active participants in their own healthcare and educating themselves to the best of their ability on what is going with them? I have a feeling I know the answer, and I have a feeling it rhymes with tower...
Informed consent is an extremely important topic in the matter of the doctor-patient power dynamic. With proper informed consent, the gap in power can become more narrow. A 2016 study from Wood et al. states that "information-sharing is core to the informed consent process... [however] many doctors view the consent process as a 'perfunctory chore'."
One Forbes article claims that "Doctors today view informed consent as yet another administrative burden, heaped on a pile of other bureaucratic and regulatory tasks that serve only to slow them down." (Pearl, 2022).
Now, listen, I completely get it. You went into medicine to practice medicine and do everything that you thought a doctor gets to do, and now that you've realized the sad reality that a large part of being a doctor is bureaucratic tasks and paperwork, you're over it. But come on, you had to have realized at some point that teaching and passing on information is not just a part of your job, but in fact a central component of it. If you're not more than willing to talk to patients, listen to their concerns, and teach them about the things that you already know, healthcare is absolutely not the profession for you.
Ultimately, the doctor-patient power dynamic has the potential to either be productive and produce an excellent outcome, or the exact opposite. Until there is an equal balance of power between physicians and patients, trust cannot be achieved, and without trust, good luck with compliance.
Society's View of Doctors As God-Like Figures
It's no secret that physicians are often viewed as superior beings. I think that it's extremely important to humanize physicians, for both the good of the general population and the good of healthcare providers.
I think a large majority of people automatically respect anyone with the title "Dr" before their name. Personally, I don't believe that anyone should be respected before earning it–don't get me wrong, finishing medical school and dedicating your career (and, in many ways, your life) to healthcare is respectable and admirable as long as you honour that commitment to the fullest. I am studying to become a physician myself and I am well aware that it takes years of enormous amounts of hard work and sacrifice to do this–and I don't believe that the pure act of completing medical school entitles a human to the ability to command immediate respect from anyone and everyone.
If you want my respect, you'll have to earn it from me through our interactions. A mutual respect is required in order for the doctor-patient dynamic to be healthy and productive. If you are a knowledgeable doctor, prove it to me; tell all about the complexities and nuances of how you came to diagnose me with x and not y, and why you decided to use a as opposed to b in my treatment plan. If you are a caring and compassionate doctor, prove it to me; put in effort to create an environment where I feel safe, heard, valued, and respected equally as a human being. If you are a good doctor, you should be able to do both, just as a sales worker should be able to sell things effectively while also providing friendly customer service.
As previously mentioned, it's important to make the following fact clear for the good of both the general population and healthcare providers: doctors are people just like the rest of us. They are not superhuman. Some of them are good people and some of them are bad people. Some of them get into the profession for the right reasons and some of them don't.
An important part of acknowledging the humanity of physicians is recognizing the issues that they face in the way that the healthcare system is set up: they are most often exhausted, burnt-out, and have many of their own health struggles, particularly psychiatric conditions. A 2020 literature review found that doctors are at a 5 to 7 times higher risk of suicide than the general population (Ventriglio et al., 2020). There is a clear issue with the way medical systems function at a structural-institutional level. If physicians are burnt-out and exhausted, they will not be able to provide appropriate care and everyone will suffer.
Forcing healthcare professionals to work in the current medical structure is harmful for both professionals and patients, and then health ends up suffering for both of these groups. I'm not saying I have any sort of solution, but rather pointing out a dilemma that we are facing in which something needs to change. Should there not be more done to work at this? When neither the healthcare professionals nor the patients are happy and receiving optimal reception/care, why is there still nothing being done to address this issue? Why, even, does it remain largely unacknowledged?
VCUG & Patient Advocacy
Trigger Warning: Discussion of a Survivor's Memory of VCUG
Patient advocacy is particularly relevant to children who undergo VCUGs. As a matter of fact, it's particularly important to any child with urinary tract, digestive tract, or reproductive tract issues or abnormalities, as these kids often undergo procedures involving their genitals. Intersex children have been, and continue to be, heinously mistreated by medical professionals in as many ways as you can think of. [Read more here]
When an adult is undergoing a medical procedure and they vocalize that they are being hurt or they want the healthcare professional to stop, the healthcare professional stops. This should be the same for children but for some reason, it's not. A majority of children who undergo VCUGs display some sort of resistance to having the procedure done, yet the procedure continues against their will. Why do adults get to have their dignity and right to consent respected, but not children? Children often get an extremely harmful reputation as being "difficult," but is that not simply because they're honest about their own needs and are less prone to making efforts to hide their discomfort/pain (especially at a very young age)?
Children are generally powerless in any aspect of their healthcare since the decision-making for their care is a responsibility ultimately assumed by their parents. Thinking about the doctor-patient power balance with regards to VCUG, we can see that children are entirely powerless in these dynamics. These children often remain in the dark about what is going on, just like I was. This leads to not only a lack of understanding, but misinterpretation.
If children do not know/cannot comprehend that it is a medical object which is not meant to cause harm, a catheter, that is being inserted into their body, they will most likely interpret it as something else–something causing imminent harm and impending danger, something that they do not know the effects of, something that, for all they know, could have the potential to kill them.
The fear I felt as I looked down as they were about to insert the catheter into my body was like no other. I thought the people conducting my VCUG were inserting an electrical plug into my body; that was the closest thing I knew of that the catheter looked like so that is what I assumed it was. Never in my few years of living had I seen a catheter before, and the most similar thing I had seen to it was an electrical prong, so that is what I genuinely thought was about to enter my body. In that moment, the confusion, uncertainty, and helplessness of the situation I was in came together to produce the most severe sense of fear possible due to a deep, sunken feeling that I was about to be killed by this object entering my body and would die at the hands of strangers, the people conducting my VCUG. I thought I was going to die and my body prepared me for death. I've since had other near-death experiences, none of which come close to that sense of threat and death I experienced in that moment. I have never been more certain about something in my life: there is absolutely nothing worse than it.
I am not the only one who felt like that, and that's because VCUGs are not properly explained to children, if at all, and it's ruining lives. A lack of patient advocacy in this situation ruined my life, and the lives of countless other VCUG survivors; it's that simple.
Sources
Pearl, R., MD. (2022, April 11). Breaking The Rules Of Healthcare: The Doctor-Patient Power Dynamic. Forbes. https://www.forbes.com/sites/robertpearl/2022/04/11/breaking-the-rules-of-healthcare-the-doctor-patient-power-dynamic/?sh=1552b9ec9de2
Ventriglio, A., Watson, C., & Bhugra, D. (2020). Suicide among doctors: A narrative review. Indian journal of psychiatry, 62(2), 114–120. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_767_19
Wood, F., Martin, S. M., Carson-Stevens, A., Elwyn, G., Precious, E., & Kinnersley, P. (2016). Doctors' perspectives of informed consent for non-emergency surgical procedures: a qualitative interview study. Health expectations : an international journal of public participation in health care and health policy, 19(3), 751–761. https://doi.org/10.1111/hex.12258
Such an incredible resource, Ashley! Thanks so much for sharing this. ❤️