How I Changed Oncologists: A guide to patient rights in New Brunswick

Ever meet a doctor you didn't like?

How about a doctor who didn't like you?

Usually it happens like this:

You feel something out of the ordinary, a bump, a lump a rash a pain. You see your family doctor, who orders a series of tests, and then after pinpointing the problem, then refers you to a specialist.

Sometimes, it takes a long time before you see the specialist, sometimes it doesn't.

Sometimes things go well, your specialist is kind and informative, and together you decide on a course of treatment and you start your road to recovery.

Sometimes things do not go well.

This is what happened to me. I was referred to one of the top oncologists in this city, and although I did not distrust his medical expertise, his bedside manner left something to be desired, as I described in an earlier post.


But what can we do? We live with a public health care system. It takes SOOO long to see anyone in the first place?

Well guess what, we as New Brunswick's have rights after all!


Let's start with our basic patient rights, as defined by the  Public Legal Education and Information Service of New Brunswick:

With some exceptions, you have the right to:

• be informed by health care professionals about the healthcare treatment;
• be informed about the usual risks, side effects and benefits of the health care treatment;
• a second opinion;
• refuse health care treatment;
• provide informed and voluntary consent to health care treatment;
• professional health care services covered by Medicare;
• choose a doctor who is willing to accept you as a patient;
• privacy; and,
• confidential handling of your health care situation. (Your health care professional may share essential information with those professionals directly involved in your health care.)

So I, as a New Brunswicker not only have the right to a second opinion, I also have the right to chose a doctor who is willing to accept me as a patient.

This is when I started looking for a new Hematologist, knowing that my current doctor worked closely with others at the Beausejour Health Network, I realized I may have to change health networks.

I researched doctors in the Horizon health network, and with the help of many online reviews (and a little FB stalking ) I found a haematologist I wanted to be referred to.

The next step was to see my family doctor to ask for the referral.

But let's not stop there

Surely it wasn't right, being treated without kindness and respect? Wouldn't this doctor simply keep treating people like this if no one ever says anything?

So, I started looking deeper and found the Code of Ethics for the College of Physicians and Surgeons of New Brunswick.

Under Fundamental Responsibilities we find:

1. Consider first the well-being of the patient. The physician should consider the well-being of other patients, of society and of colleagues, as well as his/her own well-being, but that of the patient being treated at the time must be the physician's primary concern.
   
   
2. Practise the profession of medicine in a manner that treats the patient with dignity and as a person worthy of respect. Respect for persons is a fundamental principle of medical ethics; it excludes not only exploitation and discrimination but also discourteous and insensitive behaviour.
   

This means you, and I and every other New Brunswicker has the right to be treated with DIGNITY and RESPECT.

Under Communication, Decision Making and Consent we find

1. Provide your patients with the information they need to make informed decisions about their medical care, and answer their questions to the best of your abilityThe physician is obligated, as part of the process of informed consent, to provide the patient with whatever information will, from the patient's perspective, have a bearing on his/her medical care decision-making.
2. Make every reasonable effort to communicate with your patients in such a way that information exchanged is understood.Informed consent requires good communication.

So I sent my complaint letter, to the doctor in question. I also carbon copied my family physician, the director of the oncology centre, and the College of Physicians and Surgeons of New Brunswick.

Who knows if it made a difference, but at least I played my part.


There are a lot more places these links can bring you, but if you only take one thing from this it's always important to remember your 4 fundamental rights as a patient in New Brunswick:

DIGNITY

RESPECT

INFORMATION

COMMUNICATION

People are not defined by their profession. What defines people is their ability for kindness, compassion and empathy

A Letter to a Doctor

Dear Doctor,

 My name is Jessica, I am one of your patients. On December 22nd of last year I was diagnosed with follicular lymphoma. Dr. robichaud, who was very kind and compassionate towards me told me he didn't know many details of what this meant for me, but that he would would refer Me to the best doctor he knew.

This is when I was referred to you. 

As you can imagine, I spent 2 months googling "follicular lymphoma" before seeing you for the first time on February 5th. I received a variety of information that ranged from "the median age of survival of follicular lymphoma is 8-10 years" to "follicular lymphoma is most common in men over the age of 60" to "sometimes it goes away on it's own". I didn't understand any of it. I'm not old? What does this mean for me?

During our first visit your nurse asked me lots of questions and was very kind and attentive. You came in shortly after. I was told a few things at this point; that there were other swollen lymph nodes in my abdomen, but it was normal, that this was very common, that we would do "watch and wait" that I should call if one of my lymph nodes swelled within a matter of days, I started getting night sweats, I rapidly lost weight or I was extremely fatigued. I was also told "if you have anything call my office, I'd rather you come see me if you are unsure and want to put your mind at ease" this took about 5-10 minutes and then there I was. Relieved but still confused a little. I still had no more information about what this meant for me, but I had something to hang on to.

When all of a sudden at the end of February I felt 2 lymph nodes swell in my neck in a matter of a week, I started getting a bit nervous.   

 I first researched my lymphatic system to make sure these were lymph nodes, and I found several diagrams which showed lymph nodes in these areas. I waited 2 weeks. I called- I was told to wait another 2 weeks and if they weren't gone to call back. I waited 3 weeks and called back- I was told to come in the following week, April 10th. 

 Before I talk about the second visit I want you to understand the amount of effort I need to put out to make it to a doctors appointment. First of all I need a sitter- I have 2 kids under 5 and everyone I know works during the day. Most times I have to pay someone. I then have to wake up extra early to pack bags for the kids, snacks, diapers etc and have everyone fed, clean and out the door for the drive to Moncton (we live in Hillsborough). Drop everyone off, give kisses and make it back to my car early enough to stop and get change for parking and hopefully not have to wait an hour for parking. After spending 2 hours at the clinic I get to pick up children- find somewhere for lunch (cause everyone's having a breakdown) try and make it back home early enough so I can clean up and leave for work in Moncton again at 3:30. Going to a doctors appointment takes a lot of my time, money and energy and so I don't take these things lightly. 

 So when my turn came, your nurse asked me most of the same questions and gave the same amount of kindness and attention before you came in. The first thing you said as you walked from the door to me, sitting in my chair was "so, you've noticed some swollen lymph nodes, come up on the bed and I'll examine them" as you put the chart down on the counter and walked back to me sitting on the bed you said "what did you understand about what I told you the last time you were here?" 

At this moment my heart stopped. I felt unable to speak, but you were waiting for a response, and I don't remember what I said. Was I being chastised like a child? Why was this sentence so condescending?  

 When you examined my neck, you told me the lump on the right of my chin was my Adam's apple. You told me that there were no lymph nodes in this part of my neck. You then felt the smaller one under my chin and proceeded to advise me that this would happen, my lymph nodes would swell and it was normal. That the only time i should call is when they get very big. You told me that I didn't need treatment and explained to me again why I didn't need treatment. When I asked how long before most people needed treatment you said that 70% of your patients never need it. At this point, I couldn't say much. It was so condescending, you seemed so annoyed with me. I've never felt more stupid in my entire life.

 It took everything inside me not to cry in front of you, and when you left the room I did cry. I worried that the people in the waiting room would notice. I worried That my children would notice my red face when I picked them up. So I quickly pulled myself together and pushed my tears aside for a later time and went on about my day.

That question you asked me- "what did you understand about what I told you the last time you were here"

Obviously i understood nothing, I still understand nothing. I have no idea what to do, or think or look for anymore.  

 This is why I feel I need to find another oncologist. Not because I want a second opinion, that I feel I need treatment or that I'm some kind of convoluted hypochondriac.
Because I simply want someone who will help me understand, take the time to answer my questions but mostly be kind to me a respect me as a person. 


I just hope you remember that every patient you meet is deserving of your time and respect- they may not be doctors but they're time is as valuable as yours, and no matter how big or small their cancer is they are still scared and looking to you for answers.

You are not defined by your profession. Doctors can be replaced- what defines people is their ability for kindness, compassion and empathy. 

Sincerely,

Jessica