Why Don't You "Just" Lodge a Complaint?

When a disabled person is mistreated in healthcare, they're told to 'just' complain. It's not that simple. There's a culture of retaliation in the medical field that makes complaining very hard to do.

When a disabled person is mistreated in a healthcare system, they’re often told to ‘just’ lodge a complaint.

It is one of the most frustrating reactions to hear, because it’s generally well intentioned. People who suggest we complain believe a complaint will change things. That we will get justice. That our care will improve.

Unfortunately most disabled people know that’s not the case. We know what it’s like to have to rely on a system entrenched in ableism for survival. We understand the risk of retaliation if we complain. We are painfully aware of the power imbalance. We have good reasons to hesitate to lodge a complaint.

This article intends to address those reasons. It’s going to strip back the ‘why’ behind patients who are hesitant to lodge complaints. I want it to showcase the reasons we have for hesitating, and dispel any myth that we’re lazy or don’t care about the patients who come after us.

I want to help people see that the healthcare system is broken, and in many ways it’s more broken when you’re disabled and chronically ill. If people can understand the tremendous barriers we face to adequate care, perhaps they will join us in finding solutions. They will stop blaming us for not ‘trying hard enough’ and realize that we are being failed by a system that has all but given up on us.

Photo by ifer endahl on Unsplash

Image Description: A yellow ‘Dead End’ sign on a tree lined road.

“Just File A Complaint”

The complaint process does not work the way you think it does, but perhaps it is working as intended. Unfortunately ‘as intended’ benefits the system and those who work within it, and not the patients. It discourages people from complaining in the first place, thus reducing the amount of time, money and energy the healthcare system has to spend dealing with serious issues.

Uncomfortable truth time, disabled and marginalized patients are frequently mistreated in hospital settings. We suffer medical trauma, abuse, gaslighting, misdiagnosis and more.

If you’ve never had to rely on the system on a regular basis, your perception of it is likely very different than ours.

When you’re non-disabled, you have the illusion that hospitals will make you ‘all better’ if something ever goes wrong. You have an expectation that if you go to the ER, you will be quickly diagnosed, treated and ‘fixed’.

When you become chronically ill, that illusion is shattered. You learn that the hospital is not a safe place, and that when you’re mistreated your options for rectifying the situation are few and far between.

There are many reasons for this:

• Complex chronic illnesses are not well understood by many healthcare workers.

• Our healthcare system is designed to treat acute and life threatening conditions. If you’ve broken a bone or require emergency surgery? They will likely do an excellent job. If you’ve got a myriad of symptoms from complex disabilities or invisible illness? They aren’t as well equipped to handle that.

• Bias is rampant in hospitals. We want to believe they’re above it, but every disabled patient has a story of being impacted by the bias of a healthcare worker.

• Ableism, discrimination, racism and misogyny all exist in healthcare settings. The more marginalized you are, the more barriers to care.

• Hospitals often protect their own. An extreme example of this is the case of Dr. Christopher Dunstch, a neurosurgeon who was killing and maiming patients. Many complaints were lodged, including to the Texas State Medical Board, but he was just moved from hospital to hospital and allowed to continue harming patients until law enforcement stepped in.

• There’s an imbalance of power. This is perhaps the biggest reason for the complaint process not working. The inequality between doctor and patient is too significant. We aren’t treated as partners in our care, we’re treated as less than. To be seen and not heard. They want ‘compliant’ patients, and when you lodge complaints, you’re not compliant.

The Power Imbalance and How it Impacts Patient Care

I spent most of my teens and twenties in and out of emergency rooms. I had stage four endometriosis and a host of other health issues, and I learned very quickly just how dangerous hospitals can be.

People like me avoid the ER at all costs, which means that when we are able to see a specialist there’s a huge imbalance of power. We desperately need their help, we’ve often waited months or years for the appointment, we don’t want to rock the boat.

Unfortunately, the boat is often rocking no matter what we do. Our strained healthcare system has caused appointments to be rushed, doctors to be overworked and bias to run rampant. We don’t have enough healthcare workers, and the ones we do have are not well versed in complex chronic illness.

The result is patients get mistreated. Dismissed. Blamed. Ignored. Harmed.

When you say “just walk out” or “just file a complaint” you’re failing to take into consideration the huge barriers to care we face (and the risk of retaliation).

I don’t write this to discourage anyone from filing a complaint if they’re mistreated. I do it to level set expectations so people can decide how to spend their precious energy.

If you have complex chronic illness and need a specialist, good luck. Every country is unique, but in Canada it can take over a year to get in with a specialist and you get no say in who you see. If you don’t like them? They treat you badly? You have to start the waiting game all over again.

Many of us can’t wait that long. ‘Second opinions’ don’t work in a system with wait times in excess of eighteen months. Your leverage is gone before you even start, and the people treating you know it.

There’s also a devastating lack of specialists trained and/or willing to treat many complex chronic illnesses. These conditions are on the rise (thanks in part to unmitigated Covid spread) meaning there are more and more patients trying to access fewer doctors.

This leads to a lot of unnecessary suffering. Patients waiting years for a diagnosis, if they can get one at all.

When the deck is this stacked against you, it’s normal to feel desperate. None of us should have to beg for care and yet that’s often what it resorts to. Lodging official complaints can easily land you with a note in your chart about how you’re a ‘difficult’ patient, which only makes it harder to find care in the future.

Doctors can and do refuse referrals if the patient is known to be difficult, time consuming or ‘non compliant’.

In many ways, the system protects its own. Many of the ‘protections’ that exist for patients are simply window dressing. Anyone who’s gone through Patient Relations to try and rectify a concern will tell you how ineffective they are.

You will more often than not receive a form letter response implying that you ‘misunderstood’ or advising you that Patient Relations doesn’t deal with that particular issue.

It’s exceedingly rare to receive an apology, or even an acknowledgement that a problem occurred, let alone have any steps taken to ensure it doesn’t happen again.

That’s not to say there aren’t excellent doctors out there, of course there are. I’m incredibly grateful to my current team who’ve treated me with dignity and respect and tried to help increase quality of life.

But the negative experiences caused tremendous harm, and I didn’t find my current team until I was nearly forty. That’s decades lost to improper or negligent care. To misdiagnosis and gaslighting. To medical trauma that didn’t need to happen.

When You Wait Two Years for Help, Would You Risk Complaining?

Many years ago, I found myself in an incredibly unfortunate medical conundrum. I had been having significant health issues that no one could figure out. I saw multiple specialists all of whom believed something was wrong, but couldn’t put their finger on it. I was finally referred to ‘the specialist’ who I was told would be my ‘best chance’.

Unfortunately this person had a wait list of almost two years. That was two more years of suffering in silence. Trying desperately to avoid the ER when my mystery symptoms flared up. Of missing out on work and life because I was sick with no answers or support.

The night before my appointment I had extreme abdominal pain and bleeding. I didn’t want to go to the ER because I was worried it would make me miss my appointment, but eventually the pain became too severe and I had to seek urgent medical attention.

I had a massive cyst rupture, with a second grapefruit sized cyst still intact on my ovary. My abdomen was full of fluid and I needed large doses of pain meds to control my discomfort. My blood pressure was dangerously low so the ER was running IV fluids in an attempt to raise it.

It was 3am by the time I was stable enough to remember (in a moment of panic) that I had an appointment in a matter of hours. I asked the doctor if he believed I could get there in time, and he looked at me like it was the most nonsensical question he had ever been asked.

He told me firmly that I was not stable enough for discharge and would have to reschedule the appointment. I pleaded with him to let me go and explained that I had been waiting what felt like an eternity, but he wasn’t budging.

When the specialist’s office opened at 8am, I called right away. I explained that I was in the ER having a medical emergency and wasn’t able to make my appointment. The reaction I got shocked me:

“We don’t accept same day cancellations. If you’re unable to make it you will have to wait another year.”

I was crushed. There was no way I could wait another year to be seen, but I was also confined to a hospital bed hooked up to heart monitoring and multiple IVs. I was stuck.

The ER doctor came back to find me sobbing and begging the nurse to unhook me from the monitors. When I told him what happened, he offered to call the specialist’s office on my behalf and make it clear they weren’t ready to discharge me. He was one of the good ones.

Unfortunately they were no more amenable to rescheduling my appointment when he spoke to them. They insisted that the specialist was ‘very busy’ and I either had to find a way to get there or accept the significant delay in care.

Photo by Joshua Chehov on Unsplash

Image Description: A black hospital screen with a green, yellow and red line used for heart monitoring

The Sad Reality of Living with Complex Chronic Illness

Welcome to life with complex chronic illness and/or rare diseases. The power imbalance that has always existed in healthcare is significantly more noticeable when you are a ‘rare’ patient.

There are less doctors willing and able to treat you, so the few who are available hold all the cards. Intentionally or not, it can lead to people taking advantage of how ‘stuck’ rare and complex patients are.

Thankfully the ER doctor was one of the good doctors. The ones who listen and empathize. The ones who let you be an active participant in your care. Who know that you’re the expert in your own body and should be included in all decision making.

He came into the room, sat bedside and asked me what I wanted to do.

Doctors, please take note of how much a simple act like this means to your patient. He sat beside me and treated me like an equal. He opened up the lines of communication. He wasn’t standing over me, rushing or talking down to me.

I told him that I could understand his reluctance to discharge me but that there was no way I could wait another year for answers. I asked him what we could do to buff me up and get me ‘safe enough’ to get to the appointment.

I acknowledged that they weren’t going to get me to a point where I was ‘safe’ or ‘better’, but that I was willing to accept the risk if we could make me stable enough to get through the specialist appointment and return to the ER.

He agreed to stop the pain meds and run extra IV fluids to raise my pressure. He called the hospital where my specialist was and arranged for someone to meet me at the door with a wheelchair. He gave me a voucher to pay for the taxi to take me across the street.

We made a deal that I would return to the ER after my appointment and go back on the heart monitor until I was properly stabilized, and I headed over to my appointment.

I was greeted by a very kind volunteer who seemed taken aback by how disheveled and pale I was, and she asked me if I was ‘ok’.

I did something unimaginable in that moment, I told her the truth. I refused to say my default ‘I’m fine’.

I told her I wasn’t ok. That I was in terrible pain and had spent all night in the ER but the clinic wouldn’t reschedule me. She looked at me with kind eyes and told me she was sorry and would try and help.

She took me to the office and checked in for me so I didn’t have to speak or stand at the desk. She found me a room to lay down in. Her kindness meant everything to me.

The doctor ended up being nearly three hours late, and of course I couldn’t say anything and risk rocking the already unstable boat.

I had to smile and keep my cool, all the while screaming on the inside because I could have stayed in the ER for additional treatment if they had just been even the slightest bit willing to accommodate me.

Thankfully it was a successful appointment. The doctor was caring and considerate and took the time to really listen to me. I received a diagnosis I had been waiting years for.

That said, I didn’t lodge a complaint. Why? Because I needed this doctors care. I finally received answers to health issues that had been plaguing me for years, and I wasn’t going to risk that relationship.

I suffered the effects of leaving the ER early for weeks afterwards, but I had to choose between a temporary setback and the potentially permanent loss of the first doctor in years to treat me properly and offer actual hope at improving my quality of life.

Is that a fair choice? Absolutely not. Are disabled people put in these positions all the time in healthcare settings? You bet.

It’s not fair to patients. We aren’t ‘less than’ and we shouldn’t be treated as such. We will have emergencies and setbacks. We will be mistreated. We should be able to lodge complaints and have them taken seriously. We shouldn’t have to fear retaliation. We should have a system that is working to reduce the number of serious events that warrant a complaint. A system that treats patients as true partners in care.

What Can We Do To Help Patients and Create a Better System?

First things first, I think it’s important to provide positive feedback. Healthcare can be a thankless job, and it’s been worse since the Covid pandemic began. Healthcare workers endure a lot of abuse and mistreatment, work long hours and have to contend with a lot of stress.

They’re often seeing patients on the worst day of their lives, and that alone can take a toll.

They can’t always help, and that must be terribly difficult for the ones who care. As I said above, many specialists I saw in the years prior to my diagnosis absolutely believed something was wrong with me. They seemed to feel genuinely bad they couldn’t help. I’m sure that seeing patients suffering and in pain and being unable to figure it out would grind you down over the years.

Human nature is such that we’re often quick to complain and criticize, but more reserved with praise. I think that should change.

If you have a good experience with a healthcare worker, thank them. Did they wear a mask for you without you having to ask? Let them know how much that means to you. Did they spend extra time letting you go over some additional issues or complaints? Tell them you feel valued and cared for. Did they go above and beyond? Send a message to Patient Relations letting them know what a great job they did.

Perhaps with more positive feedback, the negative interactions will improve naturally.

Unfortunately, change takes time and it’s happening far too slowly for most patients. The good news is there are things we can do to make things easier.

For Patients and Allies:

• Have an advocate with you whenever you access healthcare services. If you’re not disabled, offer to be an advocate for someone who is. You can learn more about advocacy in my article here.

• If you’re without an advocate, ask to speak to a hospital social worker, chaplain, nurse manager or patient advocate. Most healthcare facilities will have someone available who can come and speak on your behalf.

• If there’s no one available, phone or video a friend. Often just having another person listening to the conversation can change the outcome.

• If someone tells you about a negative hospital experience, ask them how you can support them. Don’t immediately tell them to ‘just file a complaint’. They may want you to listen and validate their experience. They may need help documenting what happened. They may not want to file a complaint. Whatever they’re feeling is valid, don’t push your beliefs onto them.

• If someone tells you they want to file a complaint, offer to help support them through it. An official complaint takes a tremendous amount of spoons. You might be able to draft an email, edit or assist with phone calls. Anything you can do to lessen the burden will be appreciated.

• Have a robust care plan and advance directive. If things start to go off the rails, having everything clearly documented can help avoid further errors and medical trauma.

• Believe patients. I can’t stress this one enough. All too often we have a negative healthcare experience, confide in someone and end up being gaslit and told it must not ‘be that bad’. What’s worse, if we opt not to file a complaint that fuels the belief that we’re exaggerating the experience. We’re not. We’ve just been through it so many times we feel the exercise is futile. We’ve given up. When you refuse to believe us, you make it harder for us to fight for better care.

For Healthcare Workers:

• Try and remember that what is a regular day at the office for you might be the most stressful and difficult thing a patient does that week/month/year. You’re seeing us at our most vulnerable. We’re sick, scared and coming to you for help. Treat us the way you would want to be treated. The way you would treat a loved one.

• People with chronic illness aren’t able to control when their body has a flare. Committing to anything in advance can be wildly stressful, because we don’t know if our bodies will cooperate on any given day. You can ease that stress by not having punitive cancellation policies. Understand that we don’t cancel unless we have absolutely no other choice. Be kind and rebook as soon as possible.

• Acknowledge that while you may be the medical ‘expert’, we are the experts in our body. That acknowledgment and a commitment to work with us as partners in care can go a long way. If we question you or express a concern, we aren’t questioning your expertise, we are adding to the conversation based on our lived experience. Listen to us and work with us.

• Be open to learning new things.

• Don’t criticize other members of our care team.

  Ask The Patient by Dr. Zed Zha
  just did a fantastic article on this, and how it can negatively affect a patient’s health when a doctor questions or belittles another healthcare worker that we know and trust. Recognize that medicine is a team sport, and that when different parties work together the patient benefits.

• Wear a mask. I know it’s not what you want to hear, I know many healthcare workers are sick of masking. But vulnerable patients are counting on you to protect them. To lead by example. To do whatever you can to avoid causing harm. A mask can prevent you from giving your patient a hospital acquired infection, as well as demonstrates to the patient that you care about keeping them as healthy as possible.

• Don’t threaten our advocate or caregiver. Many disabled patients bring someone with them to all healthcare appointments because they’ve learned that they are treated better when someone else is in the room. All too often, if things get even remotely tense, the advocate is threatened with removal. Please don’t do this. Our advocate is incredibly important to us and our safety. When you threaten them, you send a strong message that you don’t care if we feel safe or comfortable in your care.

• Try and encourage open communication and be willing to listen to complaints. This is a big one. No one likes to hear that someone is upset with them, that they think they did their job badly and/or did something wrong. Healthcare workers are no exception. We all struggle with criticism. The difference is that healthcare workers hold lives in their hands. Their job is literal life and death, so if a patient complains, they need to be willing to hear it. To absorb the feedback with an open mind so they can be better equipped to care for the next patient. We don’t complain to cause trouble, we do it to protect ourselves and those who come after us.

• Work with us, as true partners, and we will do the same for you.

At the end of the day, there’s much work to be done to refine the healthcare system so it becomes safer for marginalized and disabled individuals. These systems are incredibly slow to change, and don’t seem terribly motivated to take our opinions and concerns to heart.

I truly believe that one of the best ways we can try and force change is by sharing our stories. I know it’s scary, I stayed silent for years. But if we don’t speak up, the general public will never know how dangerous hospitals can be or how difficult it is to have a complaint taken seriously.

Whenever I share a story about hospital neglect, I invariably receive comments from people who are aghast and outraged but who clearly think the incident was an anomaly. They can’t understand that we all have these stories, most of us have multiples. Mistreatment of the disabled happens every single day in hospitals all around the world. Ableism is rampant, and discrimination and bias know no bounds.

So let’s keep talking. Let’s get loud. Let’s encourage one another to share our stories even when we’re scared.

Let’s remember that we are stronger together, and we deserve safe and unbiased care. We deserve to have our complaints and concerns taken seriously, and must continue to fight until healthcare is safe for all.

Have you ever lodged a complaint after a bad healthcare experience? Was it taken seriously? If you are someone who doesn’t bother complaining because you know it won’t make any difference, what do you wish people would understand about the limitations of the current system? What are your tips and tricks to make the complaint process easier, and what do you wish healthcare workers and administrators would do differently?