respecting patients while utilizing and appreciating the knowledge of caregivers

Summary:

• I want to work with patients with disabilities
• Some of those patients I'm sure will be non-verbal
• This does not mean that I don't want to 'hear' what they have to say
• It just means that the process is more difficult
• How do I best do this and while respecting the person and their agency but without sacrificing their level of care? 

Long fully explained version:


So, in a few months I start an accelerated nursing program to eventually get a masters (probably a doctorate as well) in family nursing practice. One of my goals as a future healthcare practitioner is to be as disability inclusive as possible.

I have been thinking about these issues a lot recently and brainstorming what sorts of things are involved in making that a reality and what things will be practically necessary to plan for. One of the big things that I am embarrassingly ignorant about is methods of communication that differ from my own.

Specifically, I have been thinking a lot about the issue of consent and the ways that I personally think consent and discussions about medical practices and healthcare needs to be much more of a conversation with patients. I really want to be able to engage with my patients in actual conversations about what their goals are in care and what their main concerns are as well as make it an environment where questions are encouraged.

Basically, I have been thinking about how to handle this issue of consent and patient involvement in their medical decisions when applied to patients who have communication styles, methods, and amounts different than my own or others I'm more accustomed to.

I would like to respect my patients as individual human beings with thoughts about their own lives and address them as such. In thinking about what I knew on the topic of respecting people in these situations one of the big things that I always hear is to always direct questions and look at the person and not their caregiver. This makes sense to me, but as a frequent patient (who is Autistic) and as a future medical provider, I think that applying this too rigorously limits the level of care I can provide.

As someone who has dealt with a lot of medical stuff personally I have often found it exhausting to repeat the same stories and lists over and over again. I also sometimes get overwhelmed and am less comfortable talking to strangers etc. So, sometimes I find it really a lot easier to have my mom or other caregiver type person with me answer the majority of questions and then I can correct/add as needed. Also, apart from me, these are the people who are the experts on me.

The burden of doing all the work dealing with medical situations is often too much for me alone and needs to be shared, I think this is probably true for Autistics who communicate differently than I do. Also, I think that good caregivers/support people should be utilized for their information about the person's basic medical information as well as how they can best communicate and be comfortable around me. I want to acknowledge and take advantage of the wealth of information  and support that loved ones can provide without minimizing the respect and agency that the patient deserves.

Additionally, I think that effective health interventions with patients require a support network. Not that I can think of off the top of my head health interventions, but even for example a complex schedule for taking a certain medication. It is hard to remember all the instructions and if you write it down then you can lose the paper etc. Then you have to remember to get the paper and figure out how to implement that schedule and incorporate it into your life. So, for people who utilize other people in their life for daily activities, scheduling is something they need to be involved in discussing to get the person to take the meds.

I know that I have a LOT of trouble incorporating new physical therapy activities into my schedule. I don't have good supports for helping me with managing my schedule and routine. So often I just forget to do my physical therapy. Then again, in the types of situations when doctors don't fully explain things to me and I only get simple instructions for a referral or procedure and it wasn't explain to me, it is really frustrating. So I want people to be part of all these conversations but involve the people who should be there. Not to mention that all of this can be totally overwhelming and WAY too much to deal with at a visit with your medical provider and expecting too much from a patient and overloading them isn't good either.


**Sooo, yeah. That was really rambling as I'm sure you will all (if anyone is reading) get used to. I think most of my main points are sort of clear. I would love responses/comments/suggestions either in the comments section or via email (cripradicalnursing@gmail.com). I would love to hear from autistics on what their preferences are in these situations and how they navigate them as well as from parents/caregivers about how they navigate these situations and advocate for their loved one and ensure that it is with the consent of the person. **