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Disability

Preventing, Protecting and Healing – Part 1: Advocacy

Trigger Warning: Medical Trauma

This week, in honour of International Day for Persons with Disabilities (December 3) I have been writing on the topic of medical trauma, sharing about what medical trauma is and my own story with medical trauma. With this background information, I now want to turn my attention for the rest of the week to ways that we as patients and caregivers can prevent, protect and help recover from experiences that have the potential to be traumatic.

Today I want to start with advocacy

Advocacy is a bit of a ‘buzz-word’ in many circles, and that is definitely true when it comes to disabilities. But anytime you have buzz-words, you also end up with a lot of confusion about what they look like and how they work – and advocacy is no different. And this is especially true when you are dealing with people who are vulnerable either because of their disabilities or because of the precise circumstances they find themselves in.

I have spent my entire life learning to be a patient advocate, and have taught hundreds of individuals and families how to advocate for themselves or their young children, as well as attending dozens of births as a doula and teaching and supporting my clients there in terms of advocacy (among other things). And over the years I’ve realized that there are some common misconceptions about advocacy that we should probably clear up and some principles of advocacy that we could probably stand to improve on if we want to do our best at preventing medical trauma.

Misconceptions Around Advocacy

Advocacy requires I understand everything that’s happening. I’ve seen far too many people who feel uncomfortable with a situation but because of low education or a feeling of a power imbalance between themselves and the medical team, they have felt like they didn’t have the option to advocate for themselves or their loved one. I think it’s really important to realize that ‘not knowing’ or ‘not understanding’ is a perfectly reasonable place to start your advocacy journey. There is no such thing as a stupid or insignificant or dumb question – if you don’t understand what’s happening, it’s important to ask. And if you get the cold shoulder from the first person you ask, find someone else and ask again!

I just have to say yes to the doctors because they know what’s right OR I can’t trust the doctors to get anything right. The power dynamics of a doctor/patient relationship can be really tricky for a lot of people. It can feel challenging for some people to question what is going on, in case it results in a loss of care for you or your loved one. Equally, it can feel terrifying if you don’t think that you can trust your doctors.

The problem is, this kind of antagonistic relationship helps no one. The best advocates and medical practitioners are able to appreciate that each person on the team – including the patient and caregiver – has something of value to offer the conversation, and does their best to bring their concerns to the table in a way that is clear and respectful. If for some reason, this is no longer possible, then it may be time to consider switching medical providers. When we can shift from a power struggle to a collaborative process, we make a lot of headway in our doctor/patient relationships, particularly around the issue of advocacy.

Advocacy means I speak for another person. This is possibly the biggest misconception I see among caregivers and family members. While you may need to be another person’s voice – particularly if they are an infant, are non-verbal, or are sedated for some reason – it is vital to remember that your goal is to amplify the patient’s voice and fight for the patient’s wishes, not your own. This can be tricky. It requires some self-reflection work. And it requires following the strategies found in the Best Practices of Advocacy below.

Best Practices of Advocacy

All Behaviour is Communication. For people who are non-verbal or limited in their communication, caregivers and medical personnel alike sometimes forget this most basic concept and assume that non-verbal means that the person can’t communicate.

When we assume that all behaviour is communication, however, we discover what we instinctively know with our babies as human beings – that every action, inaction, cry and movement of another human being is a form of communication. So when advocating alongside those with limited communication it is vitally important that we amplify what we are ‘hearing’ in ways that allow others to hear that as well.

Just like a mother might say to a family friend holding her baby, ‘oh, she’s started sucking on her fist, that usually means she’s hungry, let me feed her’ a caregiver might say, ‘he’s scrunching his feet, I think there is too much going on in the room right now, is it possible to lower the lights or take a pause in this procedure for a minute or have fewer people in the room for a few minutes?’ 

When we connect our ‘ask’ with the patient’s communication it returns agency and autonomy to the patient and helps us to affirm to the patient that we see them, that we’ve heard them and that their needs and wants matter.

Take time to tune in.  For many people in the West, tuning in to our bodies isn’t something we know a lot about. We don’t spend time listening to or honouring the needs of our bodies in general, and often actively do things to ignore or suppress the needs of our bodies (think about the amount of caffeine or painkillers some ingest just to manage to get through a regular “healthy” day). But when we’re not used to tuning in to our bodies, we don’t tend to know very clearly what we need, which can make it very difficult to advocate for those needs or for similar needs for someone else.

To make matters more complicated, when we are born with disabilities we don’t always have a lot of opportunities to realize what is ‘normal’ and what may be a problem. Furthermore, we may subconsciously find ourselves ignoring or distancing ourselves from our pain and discomfort in an effort to deal with these challenges.

Taking time to get to know our bodies and how they communicate important messages like hunger, thirst, pain, fatigue and illness is vitally important to becoming more effective self-advocates. Parents and caregivers can help us with this by having conversations with us about the messages our bodies are saying and what they mean. We can then develop practices like mindfulness to help us have access to more of this information when it comes time to talk to our doctors, making us even better advocates for ourselves.

Creating space. For people who are verbal but young, timid, in pain, developmentally delayed, anxious or otherwise impaired in their ability to simply advocate for themselves – and this can include some of the brightest and most well-spoken people you’ve met – advocacy by caregivers is often more about creating a space for the individual to speak then about speaking on their behalf.

So when I am in a birth room and a doctor comes in and starts talking in the middle of my client’s contraction I might say, ‘could we wait just a couple more seconds while the contraction finishes?’ Or when the doctor gives a whole long explanation of what is happening and then looks like they’re going to leave I might say to my client ‘did that all make sense? Did you understand that the doctor feels you’re not progressing fast enough and wants to break your water? Are you comfortable with that?’

When I say those things my purpose isn’t to try to control the doctor or my client. I don’t have a ‘right answer’ that I’m looking for. But I want to try to create space to make sure that my client can advocate for themselves in the midst of what can be a very overwhelming experience.

Ask lots of questions. Both as a patient and as a caregiver, I am a huge believer in the importance of asking LOTS of questions. You can only make an informed choice about your care when you actually understand what is being done. If you’re not sure where to start, here are five basic questions to ask before you say ‘yes’ or ‘no’ to a procedure:

Questions to Encourage Informed Consent - Infographic

By asking these (and other questions) you will introduce a level of agency that many patients and caregivers feel is missing in their interactions with medical professionals. This becomes especially important when you are dealing with more complex issues, or have multiple medical professionals involved in you or your loved ones’ care. 

Whenever possible get copies of, organize and carry with you all relevant medical records. (And although we are focused today on medical issues, this is also true for school-related issues when it comes to children and young adults with disabilities).

While I personally long for the day when all of our health information is carried around on a single card so that I don’t have to carry a heavy three-inch binder all the time, I can’t tell you how many times I’ve been able to speed up a process with a doctor, avoid unnecessary testing or provide important information that they simply didn’t have because I have a binder for each person in my family who has a disability. More recently with my own care, I have taken to putting certain information into a Google Sheets document that I have access to on my phone, so that wherever I am I have all of the most important medical information available to me at my fingertips

Consider your advocacy practices with all levels of your medical team. While some people get the hang of advocacy in the hospital with doctors and specialists, many forget to take these same principles into their therapy sessions or their relationships with PSW or other home care specialists. Yet advocacy at all levels of the medical team is crucial to preventing medical trauma and getting the best possible care.

Remember to Trust Your Gut. Medical professionals are trained to make decisions based on test results and data. But the human body isn’t that simple. If the data doesn’t match how you feel or doesn’t match how your loved one feels then it’s okay to say something. It’s okay to go back to the hospital three or six or twelve hours after they sent you home. It’s okay to call the clinic, or even call the hospital switchboard and have them page the specialist. It’s okay to mention that thing that seems irrelevant but just keeps niggling at the back of your mind. It’s okay to take up space, to make some noise and to trust your instincts, because you know your body better than anyone else.

Possibly most important, it’s okay to be honest about how sick you feel or how much pain you are in. It helps no one when we play the martyr, and even though I know that we live with THIS MUCH pain or discomfort or sickness all the time, it’s really important to say ‘I’m usually at a 6/10 on the pain scale but today I feel like I’m at a 10/10 and I just can’t keep doing what I’m doing – I need help!

If you are a medical practitioner … I want to be clear that I am aware of just how hard you have worked to get to the position you are in, and how much you care about the often life-saving work that you do. I understand that often the trauma that happens because of the procedures, treatments and surgeries that are necessary cannot be avoided. However … if you are a medical practitioner and you want to help prevent trauma wherever possible, may I offer this observation? Informed consent takes time. Some hospitals and specialists are doing a good job of this, and I applaud and thank you. But in my years of experience as a doula and as a patient and as a parent, may I suggest that informed consent takes more time than some medical professionals may currently be offering. Just something to think about. 

Advocating – Our Best Chance at Prevention

Ultimately the point of advocating – for ourselves or our loved ones – is to try to increase agency and autonomy and ultimately find a way of preventing some of the medical trauma that so many in the disabled community live with every day. Tomorrow we’ll look at what we do when we can’t simply prevent the procedures or circumstances from taking place by looking at the role of support in protecting and healing.

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