Confessions of the journey undiagnosed

I have a confession to make, and it’s neither pretty nor complimentary to me. I am out of patience. I confess that on too many mornings I am done with the trying to figure out if my 13 year old is ill, or if he is just 13. I am ‘up to here’ with trying to be patient with a system that has no way of telling me if any of his doctors have ever spoken to one another about my son’s symptoms. I am done with trying to find out if they have even read each other’s reports. I am tired of trying to figure out what departments are overdue to be seen and who needs to be prodded and what reports aren’t in my binder of medical history.

I am done with tying my brain into knots trying to make connections between activity levels and symptoms, signal vs noise, data vs everyday occurrences in a life that is an ongoing science experiment where the outcome measure of success is less pain and better quality of life.

I am out of patience. I am tired of trying to figure it out. I am done with the mental gymnastics of juggling appointments and interpreting information between health care practitioners and school systems and government bureaus. I need a vacation from this life of constant background calculations of ‘if this, then that’.

I am out of patience with myself because there is no other option. I am the one to tie it together, to find the pattern, to find the signal within the noise, to pull the pieces together. I must be the bastion of calm, the repository of memory, of information, of puzzling the pieces together. That is my role. And I can not afford to lose patience.

Patient Engagement – from theory to practice

Why is Patient Engagement so difficult?

I recently had the opportunity to ruminate on this when I took my son to see one of his specialists.

Background: My son is undiagnosed, but has been for long enough that I am practiced at seeing (very) many doctors. We are used to cataloguing symptoms, tracking weights, growth charts, getting referrals and such. As one of the founders and the chair of a rare disease organization, I am used to talking to health care providers in a non-clinical setting. I have been to this dance before and it is not new to me.

The doctor we went to was one with whom we have an excellent relationship – in fact a health care provider that truly believes in the value of patient and family knowledge. We were seeing a doctor that we see often, and one whose opinion we value.

This was a slam-dunk ePatient situation where I should have been at my most comfortable. Yet I wasn’t. After all these years, I still wasn’t. Why?

Patient engagement on behalf of my son is a high stakes game where if I do it wrong I’m not the one who pays. If I get the words wrong, if I fail to engage the health care provider, if my work as an advocate for him falls on deaf ears, then it is not me who pays. It is his health care that suffers. This is an extraordinary amount of pressure, and a pressure that I carry every day.

This particular visit was a high stakes game, for I carried with me new knowledge. I was excited because I believed I was bringing something new to the table that had the possibility to bring us to a new chapter in his diagnostic journey. It was important that I was seen as an equal in his medical team. I brought information that needed to be acknowledged as having equal weight as any being brought from any of his other health care providers.

I’m realizing that despite the great relationship that I have with this doctor, my every interaction is still coloured by every other interaction I have had with other health care providers that have not gone as well. I carry with me all those dismissive, patronizing and rude interactions. A lifetime of not being treated like an equal has stayed with me and remains difficult to shake.

Part of this journey in caregiving for my son is also the responsibility to teach him how to engage with his health care team. As I am advocating for him, I hope that I’m teaching him how to take his place at this table as an equal. He ultimately needs to learn how to (courteously) demand his role the health care team. He needs to take responsibility for his own health care journey.
So, to summarize, these were my very practical ePatient goals for this last appointment:

• succinctly and accurately go over the patterns that my family had noticed over the past several months
• back-track those patterns to the last several years
• check our assumptions & communicate our theory about what that means to his diagnostic journey without coming across as self-diagnosing
• communicate our wishes for the next steps in terms of health care expectations
• listen/integrate the doctor’s expertise about how to use that information
• model for my son how to do all this as a strong advocate

Imagine this was a specialist who was not necessarily open to an equal dialogue.
Imagine I was someone less comfortable or practiced with advocating.
Imagine English wasn’t my first language.

Even with every advantage it was a situation fraught with fear, uncertainty and a history of an imperfect system. A situation where a foot stepped in the wrong place could have dire consequences.

And that is why putting theory into practice is not a smooth transition. We can talk all we want about how things should go. We can go armed into an appointment with lists, and notepads, and intent to be equals. But all that can be derailed so easily by patronizing attitudes, a system that wants patients to fit in its boxes, by intimidation and fear.

A systemic change needs to happen where equality in the doctor’s office is the norm, not the exception, and has been so from day one. I am hoping that my son’s experience with a lifetime as an engaged patient will make this all easier for him. That he won’t carry the same baggage into these conversations. I guess we will have to wait and see how that turns out for him.

Oh, and as for that appointment. It went really well. It went really well because our doctor listened and because we spoke. I later realized that in my emotional state, I was not clear about all of our information. Happily, I was able to email his doctor to clarify what we had observed. Our channels of communication let us dialogue out a plan and we are moving forward. We still don’t have any answers, but at least we have a plan. And that’s something, anyway.

Patient Experience/Patient Engagement: always linked for me

Coming Tuesday on the #hcldr tweetchat is a conversation on the intersection between patient experience and patient engagement. This has made me mull over my journey as a patient advocate as a caregiver for my son.

The past several years have evapourated my blind trust in a medical system that
could solve problems for me (him), and that would seamlessly move him (me) into
the correct circle of care.

(An aside: pronouns are difficult when talking about medically caregiving and
ushering your child through a health care system. It is his journey, but we, as
his parents have been driving the journey. However, as he gets older, we need
to start allowing him/encouraging him to do more of the driving. It's a
difficult transition to make)

So back to patient experience and patient engagement - advocating for him has
led me to advocating for others and made me think about how our system works:
where our system is serving the patients and where the patients are feeling
like an afterthought in an overtaxed system.

Patient experience is how we intersect with the health care system – how it should serve us rather than how we are fitting into its construct. It is about looking through the patients’ eyes at each step and understanding how to make the patient more comfortable in the health care setting.

Beyond wanting a better patient experience, looking for a diagnosis for our son and finding quality healthcare has required us to ‘step up our game.’ We’ve had to partner with his health care providers, share information, strategies, problem solve. The only way through for us is to find the health care
providers that are willing to share this journey in partnership. This is patient engagement. Not the passive model of going to the doctor and being told what to do and when to do it. My family's knowledge of what happens at home is as important as the doctors' knowledge. Patient engagement is the active partnership with health care providers on equal terms – I know, it sounds crazy, but it just might work.

Here's the rub, not every patient can advocate or be engaged all the time. Being ill, caregiving for the ill, sometimes it is all you can do just to keep going. Sometimes we are so, so tired. And scared. And overwhelmed. At that point, we need the health care system to be run in such a way that the patient experience has already taken our needs into account. And this is why we need patient engagement – those who can, when they can, feed into creating a better patient experience for those unable to advocate for themselves. Ultimately, one creates the other in a feedback cycle. Engaged patients help create a system with optimal patient experience. Patients whose needs are put first are more likely to be able to become engaged patients.

Where am I in this process? Frankly, it depends on the day. When my son is doing well, I am the ePatient advocate, helping others, dispensing advice, social media-ing my way into creating a better system. When we’re in crisi, it is completely variable depending on which health care provider I am dealing with and on how many balls I am juggling. I need the system to work for me at that point. I need the optimal patient experience in my hospital or clinic to give me the courage and comfort to advocate for my child. Frankly, I don’t always get it. The way I see it, the two concepts, patient engagement and patient experience are two sides of the same coin that will make our health care system work better for all of us.