As a metastatic breast cancer patient, in now year three of my journey, I am keenly aware of the importance of not just “receiving treatment to live”, but to help me live my best life, for as long as possible. While on the surface it may sound the same, believe me when I tell you it is not. 

For my regular readers, you know that my journey these past three plus years, has not been easy. Having experienced eight different chemotherapy regimens within the last three years, each with its unique “buffet of unpleasantries”, and lasting anywhere from three to six months, what I consistently yearned for as the patient, was to not just treat the cancer so that I could live, but for my treatment and my experience as the patient to enable me to live a very good life, for as long as possible.  

And thus, the notion of driving towards the best possible “patient experience” has become a core part of how I navigate my journey. My intention is therefore to shine a bright light on this topic, so that it becomes a core part and essential measure of success for the patient experiences of all those navigating a cancer journey.

The definition of the verb to shine a bright light means: to examine something more closely or explain it so that it becomes clearer. To make something easier to understand.

While there is no globally standardized definition of the patient experience, I believe we need to start to move towards what that should be and, in the meantime, at least begin to create a clearer definition. To that end, I want to be clear about what the patient experience is not: most places have ‘patient surveys’ that gauge overall patient satisfaction. That is NOT what we are talking about here. We are talking about the sustainable way in which a patient can experience their care with excellence and to know they are indeed cared for.

So, back to shining a bright light.

To me, it begins with a few clarifying questions. In this case, just five core ones actually, as we, the patient, lean into creating a clearer definition of the patient experience:

1. How does each and every interaction I have with my medical provider team make me feel?

2. Do I truly feel seen and heard, especially by those with direct responsibility for my care? If so, what does being “seen and heard” look like? How does it “feel on the skin”?

3. What specific choices am I able to make along my journey?

4. Do I know how to clearly assess and balance the ‘good’ and the ‘bad’ of my treatment regimen (for the near term and the long term)?

5. What tools, tips, routines, and resources do I have easy and sustainable access to that will help guide me throughout my journey?

Grab a pen/pencil and some paper or whichever note-taking tool works best for you and take a moment to answer these questions.

This exercise can also be done through a few different lenses:

1)    If you are the patient:

Really take the time to answer these questions truthfully and thoughtfully. If the answer to some of them is “I don’t’ know”, that’s perfectly normal and a good indicator of areas where more may be needed from your care team. The goal is to find the ways to make your experience better. You are the reason for whom the “patient experience” exists and for whom it needs to be as best as possible.

2 | If you are the treating physician, nurse, or medical professional:

Think back to a recent patient with whom you met, or perhaps a patient you regularly see. Once you have selected the patient, envision yourself as that patient. Look back upon yourself and answer those questions through what you think they would say – not through what you intended to create during the visit. Really be objective here. The goal is to rewind the actual visit in your mind and see yourself through the other side of the “stethoscope”. Challenge yourself to see where you are doing well and where you can be even better. Invite your patients to answer these questions and give you their honest feedback.

3 | If you are a caregiver, loved one, or support group:  

Ah, the key group in this whole equation is the caregiver and the extended support team! You are often the ones who can best assess the overall situation and truly observe where there are gaps or where there are great successes that should continue. Sustainable wins are one of the most uplifting components of the journey and can help in the valley moments.  

With love,
Amelia O.