The Psychosocial: Get Up, Stand Up
A few weeks ago I had a mammogram and an ultrasound for something suspicious in my right breast. The results were good (phew) but I found myself being a little aggressive with the lovely ladies at the breast clinic. I have a short fuse for bureaucratic inefficiencies, especially in healthcare.
This is obviously a billion times more stressful and frustrating when you have cancer, and you are dealing with a potentially life threatening illness. I have heard from many women that for a world class healthcare system, things can be rather bumpy unless you SPEAK UP.
I happen to be someone who has no problem vocalizing my concerns and questioning the status quo of our healthcare system, but what if you are shy? Or what if you think that being aggressive will have an impact on your care? Or what if you are too sick to advocate for yourself?
What extent is it ok to be pushy when it comes to your healthcare?
Answer: A LARGE EXTENT.
You are your own best advocate and asking questions, voicing concerns or getting second opinions never got anyone in hot water. In fact, your healthcare team has come to expect it because they know that it is not always a well-oiled machine and there are cracks to fall through.
Here are some quick tips on finding your voice and putting yourself front and centre in your care:
Use Schlep
Knowing someone who knows someone who knows someone goes a long way when it comes to jumping the line on diagnostics, referrals or even surgery. While using your personal resources may feel very unfair or counterintuitive, sometimes you don’t have the time to wait. Cancer patients often get triaged quickly, but in some cases an MRI booking or a wait time on a surgery can be too long when there are limited machines and packed OR times. If you have access to people who work in oncology, a quick email or phone call can’t hurt and may help move things along.
Bring a Sidekick
Having a side-kick or ally when you are going through treatment for cancer is a necessity. If you are someone who is shy and introverted or if you are too ill and don’t have the energy to speak up, bring someone with you to your appointments who can advocate on your behalf. I am not talking about someone who can potentially be rude or angry because that will stress you out. Consider someone who can take charge in a way that makes you feel comfortable and cared for. It doesn’t have to be a family member, and it may be someone who is less emotional about the whole situation. If you don’t have anyone in your tribe who fits this description, it might be helpful to see if there is a volunteer at the hospital who can be your buddy while you are at your appointments or maybe it’s time to take your neighbour or collegue up on their offer to help.
Be a Queen Bee
I am a bit of a stickler about trusting your instincts when it comes to your health, which hopefully means trusting your healthcare team when it comes to your cancer care. We are among the luckiest people in the world to have FREE healthcare, but that doesn’t mean we have to settle when things don’t feel right.
If you have a doctor who is making you anxious or you don’t feel like you are in capable hands, it might be time to get a second opinion, and you are entitled to it. In fact, you are entitled to a second opinion for any reason.
If you have a nurse who is trying to start your IV before chemo, and they keep missing your vein, you are allowed to ask for someone else to give it a go. And if you are enrolled in a group for women with breast cancer and you are the youngest one there by 10 years, you can bow out and try something else. This is not a time to think about other people’s feelings or bruising egos – it is about you and your care. Having cancer already makes you vulnerable in so many ways and having some control over the choices you make and the people who are helping you is crucial.
Speak your Truth
Even in the most capable hands of medical professionals, there are rare instances when the health care system fails. I won’t get into details, but these situations are heartbreaking and frightening. Doctors and nurses are human so there is room for error, malpractice and abuse.
In these situations, I refer people to whatever the provincial governing body is for the particular profession. For example, in Ontario doctors have the College of Physicians and Surgeons and nurses are accountable to the College of Nursing. All regulated or governing organizations have a complaints department and process. They take compliance with their rules and any malpractice VERY seriously. If you are not sure whether what has happened to you qualifies as malpractice, you can speak to someone at the college about your concern before you lodge a formal complaint.
Each hospital has a Patient Services department where you can also send a letter if there has been any misconduct or instutuional errors. Again, hospitals take patients concerns quite seriously and will often follow up quickly.
As a last resort in Canada, there is always the Ombudsman for each province which is an independent officer of the Legislature who investigates complaints from the public about government services.
I can’t stress enough how important it is to speak up if something goes wrong for you even if it won’t change the outcome of the mistake. Healthcare professionals need to be accountable so that they can learn from their errors so that it doesn’t happen to someone else. If you are not up for the “fight” consider having a friend or relative speak up on your behalf.
