How Not to Take Care of your Patients

Hello friends and family, I hope you are all well and that you are enjoying life around you right now-- Mother's Day, graduations, summer breaks, or just the normal, run-of-the-mill day-to-day activity that may at times seem mundane.  I'm writing to you from the hospice care center that my grandmother is currently staying in for a brief visit.  I feel a mixture of emotions right now, mainly sadness and anger.  Sadness over the situation and just what is to come over the next few days/weeks, and anger over the care my grandmother is receiving.

As a nurse and healthcare professional, I try to extend grace to other healthcare professionals, as I know how challenging this job is.  However, I have trouble doing that when I feel that I am being taken advantage of.  I won't say I don't give grace unless deserved, because that goes against the very nature of grace.  It's always undeserved.  The grace I've been shown by the Lord is completely undeserved and I am thankful every day for it.  But this situation has rocked me a little, and some version of this post will be sent to the hospice facility that my grandmother is staying in currently.  It may not mean a thing to them, as apparently this is considered acceptable care here.  But I hope someone somewhere reads this-- whether a family member of someone who is ill or dying, another healthcare professional who needs reminding of why patient satisfaction is so important, or someone who just needs to be reminded of why compassion is so important no matter where you find yourself.

I didn't want to tell the hospice facility caretakers that I was a nurse.  Not because I'm not proud of my profession, but because I knew what would happen when I did.  Healthcare workers hear that there is a nurse in the room and they think, "Ok, good.  That means someone will be there to help with turning/bathing/feeding" etc.  I'll admit, I've thought it before.  Yet, I still check in on the patient, offer to turn and assist with feeding, everything that is required and expected for quality patient care.  Sometimes the family members insist on doing those things on their own, and that is fine with me and truly does help.  But sometimes the family members aren't comfortable with that and I do everything as I normally would.  Nurses, you should never assume that because there is a family member who is a nurse at the bedside that you have one less patient for your shift.  I can now say that from the other side.

Since I have been here, I've witnessed a lot of the things I see in the hospital from nurses but refuse to do myself.  I've seen healthcare workers spending all of their time charting in the nurses' station and spending very little time at the bedside with patients.  I imagine they are charting things that they aren't actually doing, such as turning patients every 2 hours, bathing, etc.  My grandmother was admitted here on Wednesday from home, was bathed at that time, and cannot remember a bath since then.  This is from a lady who is still very coherent and very mentally aware of what is going on.  She's not confused (though, at times, I admit that she mishears something we say and says some wacky things in response), she still participates in conversations and is very aware of her surroundings and her condition.

My grandmother told us this morning that they came in at 4AM and offered her a bath.  She said, "Well what time is it?" When they told her it was 4, she said "No, I never take a bath this early.  I'll sleep a little more."  The aide told her that she would chart it as a refusal, which it is.  However, when the RN came in this morning and we asked if my grandmother could get a bath, we were told she had refused after INSISTING on a bath.  My grandmother rarely insists on anything, even when she is feeling completely well.  The MOST I could see her saying about a bath is "I'd like to have one."  Which isn't insisting.  I have heard her say very little lately that could qualify in my mind as her insisting on anything, so I have to question the truthfulness of the historian who said this.  Also, the nurse seemed to have already made up her mind about my grandmother before she walked into the room, which was evident from this response about her bath.  I know it's tempting to listen to the previous nurse's report and to take this as fact for the patient, but may I please encourage you to never do this.  I have been tempted by it before, and every time I have done this, I've only disappointed myself for not giving the patient a chance to be different with me.  For some reason, I work very well with difficult patients.  And I think it's largely because I don't take what others tell me about them to be true.  I try to show compassion and understanding for what they are going through, and instead of labeling them drug-seeking, I try to understand that their pain is real and that it is possibly from years of living through pain and developing a tolerance to these drugs.

This afternoon, after my grandmother had been waiting since 8AM for a bath, she decided to doze off because she was tired.  About 20 minutes later, an aide came in and offered her a bath.  My grandma said she had just dozed off and wanted to rest for a little bit, but could she maybe have one later?  The aide said that was fine and left.  The nurse immediately came in and seemed angry, and said to me, "So just to clarify, she's refusing a bath AGAIN?"  I replied, "She did.  She's tired right now because she's been awake all morning.  She did not refuse completely, she would still like one today."  I barely go the words out before the nurse said, "Ok well I'm just clarifying, she has definitely declined a bath again."  My blood was boiling.  I understand refusals as well as anyone, I document them all the time.  But there's no need to make me or my grandma feel GUILTY about it.  She simply did not want one right now.  That doesn't mean she should sit here for another 5 days without one.  

Moments after that, the physician stopped by.  Some name I can't remember, though for the purposes of my letter I will write, I wish I could.  He asked me how things were going, if she seemed ok.  I told him I was her granddaughter and that I just got here yesterday, but so far she seemed ok to me.  He said that she had been nauseous but didn't seem to be anymore.  I started to respond, saying, "Yes, we've been trying to get her to eat more, which..." And no. I didn't stop speaking by choice there.  I was cut off by the physician, who said, "DON'T do that.  You're going to make her aspirate and you aren't going to change her condition or make her any better by forcing food."  Now my blood was really boiling, and I felt like my hands were shaking.  I rarely get angry, but oh I was mad.

What this physician may not have realized is that I am a registered nurse who has taken care of patients at the bedside for almost 4 years now,  1.5 years as an aide and 2 as an RN.  I know that feeding a patient dying of cancer does not make them better.  I also know that the narcotics she is on make her nauseous, and that since she has been able to keep food in her stomach, her nausea has subsided.  It's a pretty common sense thing to me, though maybe this physician has no understanding of this concept.  Having food in your stomach as opposed to taking medicine on an empty stomach helps the medication to be absorbed better and helps with decreasing nausea.  But who am I? Only a nurse who sees this every single day with patients of her own as she administers the same medications.  As for her aspirating? For those who don't know what this means, it essentially means choking.  It actually means that food and drink matter goes into the lungs instead of to the stomach via the esophagus, but essentially the same thing.  My grandma has not had a single issue with aspirating.  I watched her eat a cut up apple today without any trouble swallowing.  She's been drinking thin liquids and doesn't cough after (often a sign of aspiration if they DO cough), and though she needs her pills crushed now, she still eats solid foods.  So this was a ridiculous reason that I was given to not encourage her to eat.

I really almost cried in front of him, both from anger and frustration.  He had no idea I was a nurse.  He has no idea that I've watched many of my own patients pass away and that I was, at times, the only one in the room to hold their hand when they passed.  He doesn't know that I've cleaned my deceased patients, cried with their families, placed the patients in the body bags and delivered them to the hospital morgue.  He has no idea that I have a very adequate understanding of how to care for a dying patient, and that I am only encouraging my grandmother to eat for her comfort.  We're not taking life-saving measures at this point, so I am very aware that feeding her will not cure her cancer that has taken over her body.  He also clearly has no idea how to provide compassionate care for the family of a patient who is dying.  And from what I have seen from other workers here, they are not aware of this either.

Thankfully, I have learned to cry in private while here.  I'm very sad about what is going on around me, but I trust that God is good and that He will provide for my family.  I trust that my grandma will be in a place where her body is not being eaten alive by cancer.  I trust that she will dance with Jesus and that she will wait in anticipation for when I can do the same with her one day.  And I know that though our short experience with inpatient hospice at this particular facility has been horrible so far, I have myself learned from it and I have decided how I do NOT want to take care of my patients.  I always trusted hospice to involve providing quality of life as a patient nears the end, and so far as an inpatient, we haven't seen that.  My grandma has received incredible 1-on-1 hospice care at home, and we are anxious for more of that this week so she recovers from lack of care at her current facility.  I am not saying all hospice facilities are like this either-- in fact, the care here reminds me of the job I had for 1 month in Indianapolis when I first moved there, and I would not have sent any of my family members to die there (I remember telling this to people).  

I apologize if this seems like a rant.  It sort of is. And it's sort of more than that.  Because I really want a nurse or aide or someone in healthcare to read this and realize that when you're providing subpar care on a day when you aren't feeling so well or when things are bad at home, your patients and their families see that.  And though you may be vulnerable and have a lot going on outside of work, your patients and their families are sometimes at their most vulnerable and need to be shown compassion from you regardless of what else is going on in your life or in your other patients' rooms.  Even though the call lights keep going off and room 9 wants pain meds AND nausea meds AND anxiety meds, your other patients still deserve to be treated independently of that situation and they deserve excellent care no matter what you have going on in your other rooms.  

And that's it for now.  My family is really going through a rough time with this all and could really use your prayer right now.  I can't say for sure that there's a good way to die, but I know that watching my grandmother suffer the way she has with this cancer has been horrible.  It's been emotionally draining for everyone in my family, and I know it's physically draining for her.  I have only one more day to spend here with her before I have to make a 15 hour drive back to Indy to work, but I hope the Lord blesses the rest of the time I spend with her and my family here.

Lots of love and my apologies for my angry/sad post.  

Grace & peace for all of your families this week from me.

C