Melvin & Me, Part 36: Meds Day

At this point in my Crohn's journey, we've hit a good stride and pattern for treatment.  In other words, the things that I do to maintain are firmly into routine by this point.  This emphatically does not mean that there are not ways that my condition is present in my day-to-day life, but instead it means that these interruptions have become normalized.  This difference is important--my chronic illness is never "over" and is always at least quietly constant in my life.  Quiet, but never forgotten.  

Melvin, certainly, is the broadest change, needing to plan and react to my ostomy's needs in a day, over the week, over a trip, etc.  I have routine doctors' appointments and bloodwork and a colonoscopy every three years.  I take daily medications and have done so since I was twelve.  However, one of the largest parts of my care plan is a medication infusion that I get every eight weeks.  I tend to call it "going in for scheduled maintenance."  

This entails feeling a little run-down a few days before the appointment itself.  When I'm honest with myself, I'm not fully sure whether this is because I'm truly physically more fatigued OR if I am more receptive to a particular kind of tired that is usually ignored.  I allow myself to check-in with my body on a deeper level.  The whole day, even as there are other tasks, centers around self-compassion to my body.  

I practice self-accompaniment on these days.  I am intentionally with myself.  I sympathize with my own annoyance that I have to interrupt my schedule to sit at my doctor's office for an hour and forty-five minutes and get poked for yet another IV.  I resonate with past moments of myself trying to schedule and arrange the next infusion around the rest of my schedule, now that I have been getting infusions of some kind for over ten years at this point.  I focus on my resignation toward this interruption, acknowledging its necessity.  I consider my gratitude that I have insurance to pay for the $15K bill every eight weeks, that I am no longer on the medication that takes four hours to infuse, and most importantly that this medication regime is working.  

In other words, there is grief, in all its multilayered glory.  Infusion days become their own ritual, a space where I am already forced to physically tend to the realities of my condition so I choose to also make it a place to emotionally acknowledge them as well.  That means that one way or another, I am pretty tired by the end of the day, either because the infused medication is settling in or because I have been working internally all the same.  

And then in another eight weeks it's time to do it again.

Giving Up

I remember reading the short introduction to the end-of-life chapter in one of my textbooks.  The discussion highlighted how abrupt the shift can be from the mindset of "do everything possible to keep this person alive," over to "ensure that the person is comfortable and be present for the family."  Even the verbiage around this decision point can get tricky and seems inherently negative, talking about "giving up" or "throwing in the towel."  

"Giving up" can be a virtue.  Realistically looking at a situation and understanding that some of the measures available would only buy a tiny bit of time for a significant amount of suffering, some of these are no longer a kindness.  One particular family comes to mind, that they agreed to a temporary dialysis catheter, in the vein of "not wanting to give up," and added a new degree of misery to their situation; the patient was placed on hospice a day or so later and passed soon after that.  I have seen many more languish for multiple days because the patient insisted they were "going to get better," and I was no longer able to discern whether this was performative for me, their family, or themselves.  

Of course, if the line were clear we would not have so much anxiety around it.  The hard part is the finality, where tears blur even the clearest situations.  But as soon as the switch is flipped from "what measures can we take?" over to "how can we make them at ease?", I feel a particular relief in the air.  The urgency transitions to a new energy of preparation, a darker kind of anticipation.  And in myself, I feel a significant shift in how I think of that patient in that room.  I am more sensitive to their choices, as in I will not try to encourage or persuade a specific course of action--if the person does not feel like eating, then they don't have to, as I am no longer focused on the longer outcome; if they want to stay in the same position and not be turned, I can honor that without being considered negligent.  How I include the family also changes, inviting them to reminisce and tell me about their loved one as they lived--to see them through their family's eyes--particularly when it seems they need a breath of air in their grieving process.  

There is relief in making the decision.  There is still a degree of dread in place of outright fear, yet the tempo has slowed.  As a nurse, there is less to do physically in some ways, but I have the opportunity to engage emotionally, to linger in those spaces of human connection with a broader invitation than I might have otherwise.  

Not everyone makes that transition well, particularly when the goal has been to fight, fight, fight for so long.  And I think that this is in part due to our verbiage:  there is an implication when someone has "given up" or "lost the fight" that maybe if only they had fought harder, it would not have ended this way.  There is a shadow of blame that follows the words in a way that can hurt people.  

Sometimes, there is no "winning."  There's also the concept of the sunk cost fallacy, that basically means that there is a tendency to stay in a losing situation because so much time and resources have been spent toward it already.  It's harder to leave the longer one has invested, which can add context to a lot of abusive relationships.  Similarly, I have seen patients that have tried all the things to a degree that is no longer logical on an outside perspective.  And yet.  

Sometimes there is a "better" even if there is no "winning."  It takes a certain degree of energy to detach oneself and look at the whole perspective, to weigh difficult factors together.  I feel, though, that how we refer to it in the context of our healthcare, I want to make an active shift away from battles and wars and fighting.  No one is keeping score.  The blame elements add unnecessary hurt, complicate the grief, exacerbate guilt.  Someone is not lesser for determining that they have a different threshold that what people expect of them.  I work to morph my expression of kindness depending on what the patient has outlined, that they want a specific quality of life or a specific quality of comfort--they can be mutually exclusive or they can cohabitate, depending on the other factors.  Sometimes people cannot be honest with themselves about their goals, too, which makes all else much trickier, as I weigh their verbal and nonverbal messages.  

My job is to coach based on those goals, to advise based on their feedback and my clinical expertise.  I can outline options, fulfill agreed upon interventions, teach, but I cannot make decisions for the patient--I have seen many, many self-destructive choices and will see many more.  Yet when we reach a crossroads, I must find a way to meet the conversation with a certain mixture of honesty tempered with gentleness.  A conversation, seems to me, is a better framing than a battle.  

Fledgling Nurse, Part 11: Patient Teamwork

I have catchphrases, certain ways that I'm falling into a pattern in how I talk about things at work.  As I am repeating back to a patient what they have asked me to bring them from the supply room, I'll ask, "What else can I add to my shopping list?"  When appropriate, I tend to ask as part of my morning assessment of the patient "what else can I have on my radar for you?" as a means to open the door for their particular goals.  I like to ask my peers as they're walking by, "are we having fun yet?" which is met with a variety of replies, all of which are interesting.  When a patient tells me that they're in pain, I'll say "I'll see what I have on tap for you," which can get awkward when I have a patient in with alcohol withdrawal--yes, I'm trying to phase this one out, but it has taken quite an insidious root.  

I do these for multiple reasons.  

• First and foremost, I have my own way of talking that I'm a bit set it--I won't deny that this is my script in those places. 
• They can help establish rapport, set a tone that is approachable and welcoming so that we might be in a strong, therapeutic relationship.
• They're also a bit of a litmus test.  I can be a fast talker, and I know I have a compendium of weird idioms--if I am met with confusion on these, I back down a bit on the strange phrasings, speaking a bit more directly and with less, well, personality.  If English is a second language or our cultural perspectives are different or they have some kind of medical reason to not keep up with me, I now have an idea that I need to change my speech to be clear, slower, simplified, and/or without any non-standard added frill.  
• They're definitely a litmus test to mood.  If I get a smile or a chuckle or even a snarky reply, I know that we can joke with each other a bit.  A sigh in response, (non-friendly) rolling of eyes, and I can shift to a more sterile sort of professional or otherwise gentle prod for further insight to their low mood.  
• It makes me smile, to and for myself.  

I want to especially highlight "therapeutic relationship."  I need honesty between my patient and myself, firstly that they can tell me information important to their care and that they know in return that I will follow through on what I tell them I will do.  This trust is vital.  

There is a bit of power imbalance.  On the one hand, the patient is a client, the person being served; on the other hand, I have the connections between them and medication, advocacy with their doctor, etc.  As such, boundaries are imperative as well.  A patient that tries to dictate everything I will or will not do and when I will do it impedes their own care, specifically by not allowing me to exercise my clinical judgement and experience.  I want patients to have self-advocacy--I encourage it--and in the same breath I also have my own timings and needs and limitations, such as caring for other patients.    

From my experience as a patient with chronic illness and now as a nurse, the best situation is a collaboration between the healthcare team and the patient.  The patient is the one that is suffering, that literally has the most to gain or lose--they should be involved in their own decisions (where they are legally and practically able to).  However, that individual has called upon a team of experts in order to hear that counsel, to seek that guidance.  As a patient, I dug into my case, sought very specifically to understand my options and the reasons behind different treatments:  I recognize that not everyone is as interested in some of the specific mechanisms of action behind their medications, but I am disheartened when I find patients cannot even tell me what condition X medication is for or even the name of their condition they've had for years.  

The patient is part of the team.  The healthcare providers are recommending a course of action.  Questions and ideas are shared.  No side is a complete dictatorship.  

The patient is a part of the team.  

I have difficulty working with patients that are not interested in their part of the team.  On the outside, it seems that they expect wellness to simply happen to them, acting as though being in the hospital will magically make them back to better than they were before once the right magic elixir comes along.  While finding the right medication(s) is a brilliant help, there is still work to do:  working with physical therapy to prevent deconditioning, dietary changes, follow-up appointments, walking (to the bathroom, in the hallway, etc.) or some level of activity, at least moving in the bed to prevent pressure ulcers.  Truth:  some people still leave the hospital feeling crummy, but they are stable enough to continue healing at home.  At the VERY least, acknowledging that this is not a five-star resort so, no, there is nothing I can do about the quality of the food nor will I tell lab to stop collecting blood we need for additional testing nor will I ignore hospital safety protocols because they are inconvenient or stop muting the TV when we need to have important conversations.  I have had a few patients by this point, now, that fall into this group, that are grumpy about needing to be in the hospital (understandable) but then cross a line by taking that grumpiness out on staff.  Sometimes this then translates to refusing to participate in their own care seemingly out of spite.  

The specific patients I'm thinking of, I have heard them say that they want to get better, but their actions tell me otherwise.  I feel like I'm actively being lied to and then held responsible for withholding the magic wand from them, that I am culpable for their unrealistic expectations.  I've given discharge teaching and been told directly "yeah, I'm not doing that," and I appreciate and am simultaneously exasperated by their candor.  I feel a very specific frustration in these places because I have fought for so very long and fervently for my own current degree of health.  

The patient is part of the team.  The patient should not be all of the team, but the patient should not be physically carried through every metaphorical hoop that they could walk through.  Yes, it's exhausting to be sick--I know this viscerally and fully--yet that does not excuse the responsibility.  It's okay to rest; it's okay to have moments of frustration and grief; it's okay to ask for others to help advocate in the spaces you cannot.  To say that they're not giving up with one side of their mouth and then refuse all interventions, again, I simply do not believe what they are saying.  There are definitely times where the right thing to do is wait, but waiting is not a passive thing.  And doing nothing is still a choice.  

When I encounter these patients, I have to pause to remind myself that I cannot force them to choose to help themselves.  It is also not my job to carry them (except for a few places where it literally is).  I will coach and guide and cheer.  I can walk alongside and nudge people directly, where it seems appropriate to do so.  And I rejoice in the interest of anyone that wants to understand more about their condition, yes, even when it leads to an avalanche of questions.  In other words, I will support a team with the patient and their caregivers.  I cannot, however, be the knight slaying the dragon for a kingdom that doesn't care that it's burning, not when I've been handing out fire extinguishers that are sitting unused by the door.  

Pause.  Breathe.  Let it go.  Move my energy to the next patient.