Learned Helplessness and Patient Engagement #medx
My oncologist has a new nurse, and boy to I miss the previous nurse. You see, the new nurse doesn’t answer my emails in a timely fashion (they aren’t really emails, they are electronic messages through the secure myHealth system). The original nurse checked at least twice a day, such that I often had a reply within hours of sending the message. We had an understanding. I emailed my concerns and she replied the same day. There was no need to call. I only ever needed to call if the issue was urgent (e.g. I needed pain meds the same day). But now, with the new nurse, I feel like my messages are going to a void. I report a new side effect or problem, and I wait. After at least 24-hours I get a response. I can no longer expect a reply the same day (sometimes it takes 2 days – which is an eternity when you are waiting on pain meds or trying to be proactive about treating a side effect).
Today it occurred to me that I had developed a (very mild) form of learned helplessness. I had learned that reporting was not making a difference, so I stopped reporting. My behaviour as an engaged patient changed because of a behaviour change in my healthcare team.
What is important in this observation, is that when healthcare providers want patients to ‘comply’, the providers need to do their part in acknowledging that compliance. If you want me to report my side effects, you need to acknowledge them when I do report. Otherwise, I feel like I’m wasting my time and energy reporting.
Another important note here is that you don’t necessarily need to solve the problem. As a patient, when I’m having a chemo side effect, I sometimes just need a little re-assurance. I need to know that what I’m feeling is OK. It happens. It isn’t a serious complication. I just need an acknowledgement. I want you to note the side effect in my file, so that when we are discussing my care at the next appointment, you have a better picture of my experience – I am doing my part to help ensure that you have information about my experience, to help you recommend care that aligns better with my needs. It is a partnership – but that partnership only works if you acknowledge my attempts to communicate with you.
- Becky
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Your A type personality is showing. In defence of the NEW nurse, she maybe just getting use to her new job and doesn’t know the protocol or your relationship with the other nurse. I agree with you that she should return your calls asap, but give her a little leeway as she is new. You might want to let her know what you expect from her.
Love Ya !
My oncologist has never returned any of my calls through all of September and up to now in October. EVER. In fact, I’ve been told by “my” oncologist directly: “If I am in the office, I generally get back to people within a couple of working days, unless there is a medical emergency which I triage. If I am not in the office, there is always a medical oncologist covering my absence.” That’s a direct quote that tells me I’m way down the list of people that matter, if not off it completely. It doesn’t cut it to claim to be MY care giver and then pull out a policy under which care is confined conditions which suit the system and leave me out in the cold.
People trivialize this feeling of abandonment as an unnecessary burden on the system set in motion by the needs of the helpless. My first unanswered question concerned the results of a heart exam–would the chemo cause complications with my damaged and leaking heart. The second set of calls came after over six weeks of toxic reaction to my first chemo sessions that included very low blood pressure (I couldn’t walk) and a loss of over 30 pounds. I’m not sure what counts for being ill in the cancer industry–apparently I never reached that stage.
My auto mechanic has a far superior system of customer care.
I really like this post. Resonates well.
Just beginning to read your blog and appreciate that you offer your experiences in such an informative way. Looking forward to reading more. (Laurel A. Burnes, from Saturday Oct 18)