When I was in nursing school, I had the privilege and opportunity to visit a client during our home health rotation that made a long lasting impact on my life. This particular client was a former nurse with a rare, debilitating, chronic disease that had nearly taken her life on several occasions, and which left her bedbound, on a breathing support machine via tracheostomy. For simplicity's sake, we'll call her "Nicole". Although the tracheostomy limited her communication somewhat, she made it a point to impress upon my classmate and me a few key lessons during our brief visit. Those lessons have stuck with me, even to now, three years later. One thing she told us was to always remember that it could be one of us in her place, as the patient, and her in our place, but for the grace of God. That was powerful to hear, and important to think about. We should never treat our patients differently as people simply because God's plans for our lives led us to opposite sides of the bed rail.
The second point she made was also impactful, and closely connected to the first. She told us that we healthcare providers easily get in the habit of unconsciously assuming that we have the power in our interactions with patients. We come barging into their rooms without knocking, telling, not asking, patients to take their medications, or have a test done, or take off their clothes. It's probably borne out of our intentions to help, combined with the idea that we know better than the patient what they need to do to get better, along with the urgent nature of our busy, demanding jobs. Still, Nicole wanted us to realize that we hold most, if not all, of the power in our interactions with patients, and we need to remember to give some of it back to our patients whenever possible. We need to knock first, ask for permission, listen to them, treat them with respect for the people they are, and give them choices as often as we possibly can. In some cases, it may be that we can only give them a choice between taking their meds with juice or water, but once we start working with the right perspective, we may realize many more opportunities for patient choices arise. In home health, this is even more important to remember, because you're on their turf. It would be incredibly rude to come into someone else's home and start bossing them around, acting like they should listen to everything you say only because you're the nurse, without also giving them respect as a person.
I was reminded of these lessons recently because I took a shift with my old in-home care agency -- my first since moving back to California -- and it was a struggle. I expected to have difficulty with the wrong things. Yes, it's harder to stay awake and not be bored when you're sitting in quiet darkness with no one to talk to and far less walking than my usual job. Yes, it can be hard to remember that I can't do all my usual nursing responsibilities when I'm functioning as a personal care assistant. What I didn't realize would be the biggest struggle was this shift in power. In that home, I was not in power. My usual reasons to do things my way or in my timing didn't apply because my client is on hospice. I wasn't there to make him better, I was there to make him comfortable. Since no one but the patient can determine if he's comfortable, it wasn't up to me. I didn't have any reason to push him to take the meds I know would help his pain or itchiness, because it was 100% his choice. You may think (or rather hope) that this would not be so very different from my usual job, but in most hospitals, it absolutely is.
Patients in hospitals have autonomy, but unfortunately most of the time that power of choice is more theoretical than literal. If a patient declines a medication, the nurse may try to change his or her mind at the least, and he or she risks it affecting the rest of that nurse's care of him or her at the most if that nurse acts miffed about it. I had a patient tell me last week that at another hospital, she was handed a stack of forms and told to sign them. This is fairly standard, but what was not standard was that when she paused to read what she was signing, the nurse basically told her she didn't need to read it, just sign, and then took the papers away and documented that the patient had refused to sign them. Now, it's not that we don't have good reasons for doing things a certain way, at least some of the time; if I try to change a patient's mind about taking a medication, it's most likely because I know it's important and not taking it could be detrimental to their health. However, we undoubtedly cross the line, and take this unbalanced power situation for granted.
It's an unfortunate situation that medical professionals have become accustomed to holding all the power, and using it thoughtlessly, rarely giving any power to the patient. We need to remember that our patients are people, with autonomy and deserving of respect. We need to look for opportunities to put the power back in patients' hands, with little decisions and big ones. We need to remember that our situations could easily be reversed, but for the grace of God. Last night's in-home care shift was a good reminder to check myself, examine my own habits, and change what needs to change.