Saturday, April 6, 2013

If Only ...



I have so much respect for nurses.  I'm grateful for the good ones ...which I do believe are the majority in their profession.  I know they have so MUCH responsibility on all fronts.  I know how much they do care about their patients.  Nurses are only human and can only do so much at any given time and I believe most go above the call of duty on any given shift.  They put a lot of miles on their nursing shoes. I was blessed to have had the good fortune to work with nurses for 20 years.  And to have been taken care of  by some stellar ones when I was in patient frequent flier status during the urology challenges ...in bygone days.  :)  If only ...all nurses had the same level of commitment.

I haven't forgotten about posting.

 I'm still processing the death of my friend ...and what seems to have been a lack of attentiveness and compassion by the nursing staff.  I only had one night in which I experienced annoyance toward my friend and myself and a lack of compassion toward her.  But 3 other people ...one of them being an ICU nurse in another hospital, witnessed/experienced less than stellar care of our friend/wife.  Four people (The friend/ICU Nurse, another friend, Patient's husband and myself) ,all there at different times, on different days can't all be wrong about this.

I wish we were. 

And I'm still reeling that a patient ...a dying patient could be treated coldly by any medical staff ...but especially a nurse.  And I guess that is because in my mind ...I always expect the nurses will have the extra TLC to give out.  That perhaps one of the stronger reasons for being called to the profession is to nurture, help heal and empower their patients.  Or to help them die with dignity and compassion. 

Silly me.

And I know that the patient's family and friends are hurting and stressed in these situations and may even have a need to cast blame ..unfairly so ...upon the medical staff.  Or ..they do not understand the medical perspective and only see their loved one suffering and so they assume it must be the fault of the staff.

 If only ...that nurse ...that doctor ..that, that, that  ....if only they were better ...my loved one would not be dying.

That of course isn't fair and is a human reaction to frustration, fear, desperation and denial ...which when combined with a lack of medical understanding can exacerbate to anger and blame.

But when you have 4 different people who were there visiting/helping her at different times and days, coming to the same conclusion because of various experiences with their loved one ...something IS wrong.  In my friend's case - was wrong. She's gone now.

And I am not at all saying that is medical staff's fault.  She was gravely ill and had a medical history that caught up with her for whatever reason.  I am still NOT clear on what happened. Was it the major surgery that had nothing to do with her previous medical history that proved too much for her body to handle?  That is what her husband relayed to me that the surgery was too much for her kidneys and liver.  But the surgery was in February and she had been home.  Did that major surgery set her up for  ...sadly ...what was to come ...even though it was not why she died?  Were the more recent events a complication of that surgery?  or maybe complication isn't the right word because that would've been closer to the surgery - I think.  But maybe the surgery ..the major assault on her body was the catalyst for everything else that transpired. ?  or maybe the initial condition causing her to need the emergency surgery ..somehow is linked to the sepsis she had at the end.  Although ..that is doubtful because they would've tested and she was infection free and had stopped antibiotics.  Although even that is confusing to me ...because they gave her antibiotics when she first became an inpatient on the floor, but then stopped them stating there was no infection.  She became weaker and weaker and doctors were perplexed and did not know what was wrong with her.  Then this week, part of the reason they couldn't do a procedure was because of infection ..which I now know was sepsis. 

Unfortunately, the main person that relayed the info to me is apparently a poor historian when relaying the facts of the case.  Probably anxiety ridden themselves.  Oh how I wish I could've gone into the hospital to see her when she was an inpatient on the floor ...before she ended up in ICU.  I didn't know she was there until 4 days after admit and then I still couldn't get there because of things going on with me.  I do regret that I didn't just go at that tine.  She would've given me her patient number.  She did give it to me  this past Tuesday night. She was unable to communicate when I was there Friday night.  There is just so much to write.  Maybe I will ...maybe I won't.  Writing is cathartic.  It won't bring her back.  I certainly am not going to make any waves.  I don't feel it is my place.  But oh ...if it involved my family - God forbid ...I sure as heck would not assume all is well and leave them alone.

 I've always said this ...you need to be your own patient advocate and if you can't, you NEED someone to advocate for you.  After all of this ...I believe it more than ever.  This experience was a classic example for WHY no patient should be left to fend for themselves in a hospital.  But ...most people don't know this.  They assume they're friend or family member is going to have everything done for them when it needs to be done, the way it should be done, will not be forgotten and will be treated with compassion, dignity and respect.  It's the staff's job after all.  This is what they do - take care of their patients.  It is both assumed and expected.  I always thought the same thing. 

But the reality is that mistakes happen, staff is human and not all medical staff operates with the same level of dedicated professionalism.  And then there is also the reality of short staffing and not enough time to follow through with the paperwork or I should say computer work ...never mind timely, quality patient care.  So ...patients NEED advocates.

I am just trying to understand.  If I had to be a patient - I always preferred being in this particular hospital. Now ...at this point in time ...I would be very concerned if God forbid - I had a loved one in this ICU.  Or even myself.  Maybe that is not a fair statement for me to make since I am basing it on only one patient experience.  But 4 of us saw the lack of compassion. (I did see some friendly nurse faces tough, although the one she had that night - definitely NOT.)  Her husband stated he thought some of those nurses should be in a different profession.  The ICU nurse/friend told me that They would never get away with half the **** they pulled and would never get away with it in her hospital.  She spent the most time with our friend.  The other friend was livid over something and after two days blasted the staff and within 10 minutes a social worker came up and got the procedure going.  ( I will say that perhaps the staff knew it was hopeless and why put her through it ...but even then it was obviously poor communication.  Our friend was suffering in pain and for TWO days waiting for them to come and do this for her.)  After doing it, it did turn out she was not able to have the procedure.  Tuesday night, my friend - the patient kept telling me she wanted to know everything that was going on and no one was talking to her.  She wanted to know if she was going home again.  She had pain meds, but was lucid, articulate and knew exactly what time her last dose was, etc., and was able to give me direction for some things she wanted.

Anyone who is familiar with my medical posts, knows that I fully support and am grateful for the terrific medical care (with only a few exceptions in my life), that I have gotten from so many doctors, nurses and technicians.  I also worked in the business - in patient access for 20 years as well as serving multiple clients for 5 years working for LifeLine, while at the VNA.  I LOVED it!  I had ample opportunity to witness first hand what stellar medical care looks like in the 20 years worth of medical staff - patient interactions at the hospital. I know how to help patients, to treat them like they matter ..and their families. I was blessed to have been a part of that and loved to assist the patients in many ways ..always providing extra TLC whenever I could ...even as the paper pusher (who also got to help with other things involving patients too) and would also go out of my way to be helpful, kind and compassionate with the LifeLine clients as well.  I could not imagine treating people any other way.  And then as fate would have it - I became the frequent flier patient thanks to that first large kidney stone.  I was a frequent flier to the ER, SDS, OR, Out Patient testing, medical office - both front and clinic side and in different facilities, depending on the test du jour.

So ...I also had ample experiences being the one on the opposite side of the counter ...being vulnerable on a stretcher ...at the mercy of medical staff.  And I have to say that at least 90% of my experiences with medical staff in all areas were positive and those skilled, kind and compassionate professionals helped get me through some scary and challenging times.  They were terrific.  There were a a few negative experiences and that is a shame when it happens.  But ...I was not dying!  Okay once I thought I could be ..in post op ..but that is another story.  I wasn't and they knew that.  Although better communication and a warm reassurance could've eased that for me.  Again ... another post.

My point is ...I ...as a patient already had knowledge of the business ..how it works with medical staff - why they do some of the things they do and so I understood things, which did help me to know at times.  Also ...even when at my worst ...I still didn't have the same worry that my friend must've had - knowing how grave her condition was and enduring the intense physical pain, weakness and not able to do anything for herself ..including feed her self. (I learned something disturbing about that today too!) I wasn't wondering if I would go home again.  I did not see death as potentially imminent.  I did not experience that same fear she expressed and I saw on her face when she was trying to get her breath.  I did not ever feel her terror at being transferred out of one area into another.  And I did not feel afraid of the staff that my life was dependent upon ..like she had become. I wasn't afraid to be alone with only the staff to take care of my needs. 

 Instead, I had many positive medical staff interactions amidst my challenges at the time.  To experience anything less would've been upsetting and I did not have to deal with the same physical and emotional challenges that she did.  Not even close!  And I had people to stay with me if I wanted, but instead I told them to go home because I really was alright alone and couldn't see them having to sit there for so long.  But if I (God forbid) was as ill and was treated like she was at times ...I would NOT want to be alone either ...NOT in her state.  Sadly ...no one could stay around the clock.  And the one person who could have ...did not.

So ...for the life of me ...I just do not understand why they expected her to do things she was not capable of, reprimanded her in one instance that I know of and it certainly was NOT her fault and she NEEDED HELP.  If a patient is lying there in that weakened state ...shouldn't you be MORE attentive?  And not display coldness or irritation.  Shouldn't you show warmth and at least say hi when you change an IV, do a blood pressure, or whatever?  Shouldn't the patient be treated with dignity ...like they have value and are not just a job to get done? 

I wrote more and there is so much.  Putting our stories together ..it is upsetting to think how she must've suffered because she did not have an advocate there for her most of the time. 

I am also concerned that she was so hungry at one point and thirsty for most of it.

I will never forget how her tongue and lips were cracked and flaking when I saw her Friday night.  I can only imagine what her throat felt like.  I will come back to this and being fed.   I was never with a patient who expressed fear.  And she did that as late as 1 am Wednesday morning.  I swear ..if I knew she would die a little over 24 hours later the next day ...I would've stayed longer and I would've gone back the next day.  My plan was to stay with her Thursday and into the evening.  But it wasn't meant to be.

I just can't help wondering ...if some things were a bit different ...would she have gotten more time at home?  Because I also know her spirit must've been crushed that last day and that was not from medical staff. I wonder ...even though she was seriously ill ...if she had had a positive experience with nursing and other medical care - on both floors, if the very negative person in her personal life had not been so negative, if she was able to hold on to the hope imparted to her by other friends and myself (because she got stronger in our presence as we talked with her) and with all the many people praying and churches ...would she have thrived against all odds and been able to fight better if she had continual support?

If only ...

I also want to discuss the importance of speaking with hope and being positive around a patient ...especially if they are dying ..IF they have not accepted they are dying.  And certainly you can still be positive around a dying patient.  It will help make the transition easier instead of going out with angst in your spirit like I am concerned she did.  :(

This was a lesson in how ...God willing I do NOT want to die.  Nor do I want my family or friends to experience dying this way.  God forbid.

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