Giving Tuesday 2018

Giving Tuesday 2018 starts with a picture:

They say a picture is worth a thousand words, so what words would you use to describe this room? Imagine being a child, how would you feel walking into this room? What comforts do you see in this room for a child who is feeling scared, alone, worried, or sad? How would you feel if I told you that for the next 8 hours, this room would be a place that you couldn't leave?

Now what if I told you that this is an outpatient treatment room at a children's hospital? 

My first impression of this room goes along with words like "heavy", "depressing", "discouraging", and "boring". In order to "win" a trip to this room, I had already failed other treatments to get my Crohn's Disease under control, so there was already this feeling of having been defeated. Now, I was going to start a new IV treatment, where the potential for serious reactions meant that it had to be done in a carefully monitored environment. It was so carefully monitored, that for the duration of the treatment, you need to pretty much stay in your chair, with the only distractions other than medical equipment being the items you brought with you that day. These were the rooms where I was started on Remicade treatments, and after failing Remicade, received on-going iron infusions. This is the room where I sat wondering how this treatment would make me feel, if it would be helpful, what reactions I would experience from it, and plenty of more questions. This is the room where up to 6 other patients are receiving their own IV treatments, but you can often tell that they too, are just as worried and feeling the weight of the world on their heads. This is the room where you often find out whether you are responding to the treatments. This is one of those rooms that you'll likely remember for a very long time to come.

As most of you know, I've spent A LOT of time at Sick Kids Hospital in various departments for my ever-growing list of medical challenges. I've had a lot of opportunity to compare other areas of the hospital with this area, and really, there is no comparison - this is one of the areas of the hospital that is in desperate need of an update. Unfortunately, this is also one of the areas of the hospital that is severely under-funded within the hospital's budget, with the majority of the general fundraising going to help other areas of priority. The result are these rooms where the environment does little to help lift, engage and support the patients who use them.

This Giving Tuesday, I'm asking once again for your help to make my dream of child-friendly outpatient treatment rooms come true. These rooms should help to encourage healing, give hope, lift the spirits, distract from the worries, and inspire others. Jacob's Healing Rooms project at Sick Kids hospital will help to make treatment day better for all of those patients who will use one of these rooms in the future. Your generous donations will help to purchase materials such as covers for the awful lights, bubble tube machines, a fresh coat of paint (in a different institutional color!), as well as electronic gaming machines that will hopefully allow patients to play together as a way of building peer support.

I'm closing in on my goal, $42,000 out of $60,000 raised so far, but I need your help to turn my wish into reality. Please consider making a donation today to Jacob's Healing Rooms project at Sick Kids. Together we can make a huge difference in the lives of kids who are fighting for better days. Together we can make treatment day a bit less scary and depressing. Together we can change the whole treatment experience.

To donate: https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3641076

THANK YOU!

What I Would Teach to New Doctors

Dear New Doctor,

Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.

As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.

The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.

Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.

It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients. 

Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected. 

Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.

To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.

Thanks for reading!
Wishing you the best in your future,
Jacob