I have been asked to share about how one might navigate the healthcare system.
I am someone who has experienced extremes of healthcare quality. I have had astonishing, and even heroic care worthy of the highest mountaintops. But I have also received horrible care (so truly terrible that the doctors involved were disciplined by the College) worthy of the lowest valley. I would like to share.
How I wish I had known, at the beginning of my cancer journey, what I know now. Doctor One and Doctor Two said the rectal bleeding was due to an antibiotic reaction. Doctor Three said I was having “the bowel equivalent of a nosebleed.” General Surgeon Doctor Four said it was mere inflammation. But it was none of these things: it was stage IIIC rectal cancer. From the day I walked into Doctor One’s office with semi-urgent symptoms and an immediate family history of colorectal cancer, my wait for diagnostic endoscopy was not the recommended 60 days – it was 661 days. From symptom onset to cancer treatment, I waited two years. The reason? “You were under 50,” they shrugged. I was 48.
After chemo, radiation and surgery, I discovered to my horror that the best-practice chemotherapy for high-risk rectal cancer (FOLFOX) was not available in my province of Nova Scotia. So my support community and I successfully lobbied the government – a process fraught with its own adventures – to cover the drug. Unfortunately, the approval came too late for me to receive it. But I took on another battle: I sought justice from the College of Physicians and Surgeons regarding the bungled and inadequate medical attention I experienced. Three of the four doctors were disciplined.
I wrote a book about my harrowing experiences, The Cancer Olympics, In the three years since entering remission, I have become extremely active in cancer patient advocacy, serving on several provincial and national initiatives to develop standards of cancer detection and care. Every day, I devote some time to helping those impacted by cancer.
I have learned many lessons about navigating the health care world as a patient, a caregiver, and a patient advocate. I have experienced the very nadir of healthcare, but also the very pinnacle of it. Here are 10 lessons that I want to share, so that you too can get to the mountaintop.
1. Who is the captain of your team? The College investigation into the medical wrongdoing in my diagnostic path revealed that the four doctors involved failed to communicate with me and with each other. Each doctor assumed some other doctor would take responsibility, so in the end none of them did. Once you are in cancer care, learn who will be your medical team quarterback – or be your own.
2. Always check to ensure results are received and communicated. Like many, I assumed “no news is good news.” Big mistake! My diagnostic doctors did not share with me the test results that might have made a difference had I known them. Any test you take, call directly to ensure that the results were received, recorded, interpreted, and shared with you.
3. Referrals get lost – stay vigilant! Research shows as many as 30% of referrals between doctors go missing. This occurred to me repeatedly. Whenever you are referred, call both the sending and receiving doctor’s office to ensure your referral was processed.
4. Have someone with you at all appointments. Have that person take notes. No matter how educated you are, how young you are, how careful you are – cancer care appointments make the strongest head spin. Another pair of ears will ensure that the facts and recommendations are truly heard.
5. Call in all your markers within the healthcare world. If you have a doctor or nurse as a relative or friend, call them. I know that we would like to believe that everyone gets minimally adequate medical care regardless of who you know inside the system. But the truth is that insiders can help. Now is the time to ask for all the help you can. There were many instances in my cancer pathway when knowing a provider facilitated my care, and even times when it proved my salvation. I just happened to have a nurse friend who just happened to know the best colorectal surgeon in Nova Scotia. Had I not reached out to her, I would have never heard his name and never known to fight for him. And I would not be alive today without him – of this, I am certain.
6. Do your very best to understand your disease. If you are too overwhelmed to do this, let a relative or friend do it for you. I cannot say it strongly enough: THE INFORMED PATIENT IS A SAFER PATIENT. I have a PhD in clinical research, so I threw myself into researching my condition – this is how I learned about the chemotherapy gap between my province and others. If there are guidelines or standards governing cancer care in your province, learn them. You may need to advocate for yourself or your loved one, and knowing what care can be expected will ensure it happens in a correct and timely fashion.
7. Consider bringing a data stick to your clinicians’ offices and ask for all your records to be downloaded to it. That data stick will help doctors access your full record during appointments, and may even save you in an emergency. In my province, healthcare information is not yet coordinated in such a way that ERs can track it. Consequently, ER doctors can have no clue about your past when you show up there. Consider wearing your data stick on your person, so that your health information can be available to ER staff if you are too sick to communicate.
8. Don’t forget your dentist! Many of us, confronted by cancer, forget about our other allied health care providers. But dentists can help prevent the oral problems caused by chemotherapy: they can buff your teeth and do other work that will decrease the likelihood of mouth sores. Prior to chemotherapy, go see your dentist, and keep him or her “in the loop” throughout your treatment.
9. Find a survivor to talk to. There is NO SUBSTITUE for talking to a survivor of your cancer who has undergone the treatments you face. Survivors can teach you about the alternatives, alleyways, shortcuts, and questions to raise, not to mention the value of the emotional support they can provide to help you stay strong as you navigate the system. The Canadian Cancer Society has a peer support program that can offer you an appropriate match with a trained volunteer who has faced what you face (1-800-263-6750).
10. Many of us cannot travel to a support group. We live too far away, or we have small children, or we are simply too sick. Fortunately, technology can come to the rescue! Online support groups are available through www.cancerchatcanada.ca. Private groups abound on Facebook too. You are never, ever alone.
The medical world is full of dedicated and caring clinicians who will advocate for you and help you navigate the healthcare system. But one must always – always – be ready to advocate for oneself. In the end, you are the captain of your own ship.
As they say in Nova Scotia, “Godspeed you to safe harbour.”
Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years. She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers . Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015. Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo. She is currently in treatment for a recurrence of her cancer.