The ethics of time: Setting boundaries as a rare disease caregiver
Time is a precious commodity, so I want to use it well
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Every two years, I have to recertify myself as a licensed social worker. This process involves completing a significant number of continuing education units, commonly called CEUs. The one area of focus where I always struggle to find enough fresh, available training is ethics.
Despite the lack of abundant coursework, ethics is of the utmost importance to my profession. Back when I was practicing with a team, we would frequently debate the ethics surrounding different situations — sometimes even debating whether it was more important to follow the letter of the law or our ethical code of conduct, often to our lawyers’ dismay.
Now that I have a 14-year-old daughter who was diagnosed with a rare, progressive disease called Friedreich’s ataxia, I find myself in the position of the client rather than just the professional. This shift has completely transformed my perspective on ethics — specifically, what it means to be ethical when it comes to time.
We know time is precious. It is a concept we think about constantly in the rare disease community. How much time do we have left, and what will the quality of that time look like?
Because of these heavy questions, I need to be incredibly careful about where I invest my time and energy. Naturally, this awareness has led to increased frustration with some of the medical professionals we encounter.
The undue burden of resources
As a professional, I used to hand clients thick resource guides with links and phone numbers to various services. I didn’t realize at the time that I was creating an undue burden. I was expecting the client to filter through all of those resources to figure out what they needed, rather than taking the time as a paid professional to understand their specific situation and highlight the best fit.
Being on the other side of the desk, I now find myself being handed pages upon pages of documents with nonprofit information and brief descriptions. Often, the professionals handing them to me don’t fully understand the intake processes, the likelihood of a waitlist, or if the service is even a good fit for our family. This is a dynamic I am actively working to change.
The first step I’ve taken happens right inside the doctor’s office. Now, if a supportive professional walks in wanting to complete an assessment or begins a line of questioning, I pause them and ask: “Have you read through my child’s file?”
If they haven’t, I ask them to do so before we proceed. Setting that boundary puts the burden of preparation on them, not on me, and it might help them to rethink what they are doing before they walk into a client’s room.
I am also critically evaluating whether certain assessments are helpful. For example, a psychosocial assessment completed by a social worker is often used to uncover resource needs. However, because our family doesn’t qualify for many of these resources and doesn’t need that specific support, filling out that paperwork is an investment of time with no return. This means I can say no.
Flipping the burden and leveraging AI
When I am given an overwhelming amount of information by professionals, I have started asking them directly: “Out of all these different services, which one do you think is a good fit for our specific needs?” They may not always have a good answer, but my goal is to reframe the conversation.
To further protect my energy, I’ve started bringing my daughter, Amelia, into this process. I ask her what she is looking for, type up her needs, and then have artificial intelligence (AI) filter through the various offerings we’ve been given to see what it recommends. I can ask AI to review the websites for these services, check if there are waitlists, summarize what others say about them, and determine the actual benefits.
Time is a precious commodity, and handling it ethically as a professional is vital. By setting firm boundaries, I ensure my time is well utilized.
I will constantly recalibrate to ensure that what is being done best serves our family’s and my needs. To my colleagues in the field: We have some work to do. Let’s continue to work to serve people well.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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