Tuesday, March 25, 2008

The 'whole' truth? Is it really that difficult to say?

I whole-heartedly believe that we should be open and honest with our patients and their families. Even when we have had a new delivery/admit into the NICU that is very sick and the family is asking if everything is going to be okay, we try to be optimistic- but we don't lie to them- we tell them that their baby is sick, what we are doing and why. We don't want to scare them and make them think that their brand-new baby is going to die right there in front of them in the next 10 seconds- but if it is serious which I have had my share of these- my full resuscitation that required lines and meds to keep the blood pressure up at the same time that we were preparing another baby for transport to our level 3 for a total blood transfusion- our neonatalogist I remember was asking which baby do I need to see first as I am coming into the NICU doing compressions and he was getting ready to do lines for transport on the other baby- that night was considered controlled chaos- both babies turned out fine- but we were open and honest with both sets of parents- their babies were very sick and we would do everything for them, keep them up-to-date on their progress. But when things don't go so well, which unfortunately in my department does happen- in fact it happened with my very first micro-preemie I have heard more than one of our neo go in and speak with an expectant mom and her partner while we are either trying to stop preterm delivery or a preterm delivery is inevitable- they (the neo) basically lay it all out- depending on who it is- they are able to do so with a little more warmth and tact, but they all tell the parents the facts- all of them the and the bad- this may sound cruel, but at least our parents go into their deliveries with some sense of what is about to happen- we don't except them to remember everything that we told them- but at least we told them the truth, and whatever happens we continue to do that. Back to the micro-preemie- this baby's parents didn't want to believe what they were being told- they thought that their little miracle would fight and prove us all wrong- I wish that I could say that that is what happened in this case- the birth was beautiful, the baby so tiny, my hand forever a part of documentation for size as a family photo- the next 5 1/2 months forever burned into my memory as specialist upon specialist truthfully explained to this family that the outcome was never going to be positive, that there is nothing that can be done- this baby was just born too early with too many problems- we are sorry, we have tried, but we can't fix what is broken- no matter how hard we try. I know these parents at times thought that we nurses were heartless and didn't care about their miracle- I stopped going in this child's room in August because I couldn't handle seeing this bloated, grey 'baby' that just 4 months prior I had helped deliver and stabilize for transport to the level 3 NICU where this short life was lived out. These parents were so wrong- all of the nurses that came into contact with this child more than cared about that life- the parents found us heartless because we all didn't agree with this child being kept 'alive' suffering through infection after infection that couldn't be treated because surgery was never an option due to the baby's frailty- the baby never breathed without assistance, the brain fought for space between the grade 4 ventricular bleeds and the hydrocephalus that has developed- this baby that is almost 5 months old that was born weighing slightly more than 2 pounds with a sweet cry of that sounding like a kitten- looking like a normal healthy baby except for the fact that everything was in miniature- again the length of my hand (tips of my fingertips to just below the base of my thumb) to now a head swollen with blood and fluid, body bloated with infection, skin no longer pink- central lines, cardiac leads, feeding tube, breathing tube with ventilator- you all reading this may think us cruel, but I would say that 99-100% nurses, doctors, NNPs, RTs, CAPs- all caregivers that came in contact with this poor child where all praying for the same outcome- that this child's' suffering would end soon since the parents continued to believe that we were all wrong even after each specialist would excuse themselves from the case since they could no longer deal with pain that they felt they were causing to this child by continuing the current plan of care- the parents were always told the truth- the cold hard truth, and each time they wanted everything, and I mean everything done- they were present for multiple codes as this child went into multiple organ failure at the age of 2 1/2- 3 months- the end of this child's life was wrought with 4 back to back full codes- each time we hoped that the parents would understand what we were doing to their innocent child; each time we would hope that this poor innocent child would make the decision that the parents couldn't that the body would just finally give out and it would all be over- finally in October at the age of 5 1/2 months the parents realized that we hadn't been lying to them, we hadn't been sugar coating anything- that this precious miracle wasn't going to be going home with them- they finally allowed us release this precious angel from its prison and signed a DNR order.

Why did I tell this long depressing story- for this reason, my husband and I have some dear friends currently going through a situation where the doctors aren't being open and honest. Our friend is not being told the whole truth, he is getting what I call the candy-coated version of medical truth. Why adults are given this truth instead of what they really need to be told I don't know- According to the American Heritage Dictionary, this definition is given, and it is all to true.

To minimize the unpleasantness of; sugarcoat: "Trust is damaged when doctors seem overoptimistic, or candy-coat the truth"
A little back ground on our friends- my husband and I used to participate with a medieval reenactment group- the SCA (society for creative anachronism) we met this couple about 11 years, they were not together at the time, in fact she thought that he was annoying, he thought that she was amazing- I was new to the SCA thing- this was my first event; at feast that evening the four of us ended up kind of sitting together- she was less than thrilled with the arrangement- but was talking to me, my husband was talking with him- end of story. Fast forward several years, not exactly sure what happened- but they ended up together- fate has a weird way of working itself out :) They were married I believe about 5 years ago (they are also Trekkie's- they were married in Klingon wedding garb) They now have 2 beautiful children- a very, VERY busy man child that has his own personality and has since he was barely 2- and a beautiful princess that recently turned 2.

The current situation with this dear family started a month or so ago with brain surgery to remove what was a recently discovered brain tumor that luckily was benign. She was in recovering well for the first few days, then everything started going down hill slowly- and now in the past 2 weeks the pace has quickened but the candy-coating has remained. First she developed pneumonia which in turn caused partial spontaneous pneumothorax (partially collapsed lung) to fix this they re-intubated her and placed her back on the ventilator and high dose antibiotics- the ventilator took the pressure off her lungs and helped to re-inflate the pneumo. They have tried to wean her from the vent multiple times and each time her sats plummet almost immediately into the 50's.
Last weeks development was the discovery that she has progressively been getting weaker on the right side- a brain scan showed that she has suffered from 2 strokes, 1 effecting the brain stem the other elsewhere in the frontal area of the brain- it was also discovered that that she has a pseudo-aneurysm that is slowly leaking causing further damage. She is losing the ability of motor functions- she attempted while on a recent visit by a mutual friend to either spell something or ask for something of a nurse- she was given a pen and paper, a board with letters on it, and much assistance- she resorted to finger spelling in the air- she is losing the ability to communicate basic requests, cognitive abilities are decreasing- but again these are all just 'temporary'(The brain stem stroke would explain the inability to wean her from the vent.) All the while her dear husband is continually being told that each set back is temporary, everything will be okay- I know he believes this because he has been passing this 'hope' on in his updates to all of us in his emails, in the visits by mutual friends, by what he has told his son. Childcare recently fell through and he had to bring his young daughter with him to the hospital- when she saw her Mother, that sweet baby freaked out at the sight of her Mother- the tubes, the machines- it was all so overwhelming for the little angel. The other thing that I believe is that children are innocent and still have the ability to listen and see things that most adults can't or won't- but that is another post.
Today's developments- again only temporary of course- she will be extubated, because she is getting a trach; the nasal feeding tube is being removed, because she is having a more permanent- yet only temporary- feeding tube surgical placed into her abdomen. The pseudo-aneurysm continues to leak- the medical staff is trying to keep her blood pressure down in order to keep her intracranial pressure down to keep the leaking slow and to hopefully keep her from having further strokes.
I wish that the medical staff- both doctors and nurses would stop with candy-coating, because very soon that pretty perfect candy-coating is going to start to develop cracks that no amount of rainbow sprinkles ,gummy bears, or Photobucket is going to be able to cover up and someone is going to have clean and explain truthfully that what started as brain surgery to remove a benign tumor has turned into something much more serious- something that she probably is not going to recover from- she can't stay in the hospital indefinitely. We placed the trach and the G-tube (gastric feeding tube) because the other tubes cause damage to the soft tissues of the palate and the sinuses over long periods of time. These more permanent therapies will allow your wife to be transferred to a long term care facility- where I am sure he will again be told it will only be temporary while she continues to recover and where they can help her rehab. Or maybe, just maybe someone will get a heart and look into his eyes or the eyes of that mischievous demon spawn (their nickname for the man child) and the baby princess and begin to tell the cold hard-uncoated truth- that she may need to go home with a nurse- see what happens and go from there.

Why am I so concerned about all of this, besides them being friends, and the fact that their are 2 small children involved? Besides the fact that I am a nurse (albeit the fact that I am not allowed to work currently)? I am concerned because this hits too close to home- my family went through 5 months of this hell on Earth beginning February 1992 finally ending July 11, 1992 with my maternal grandmother. She developed an aneurysm while she and my grandfather where on their yearly vacation in Arizona with another couple. My grandmother was airlifted from Yuma, Arizona to the hospital in Phoenix where they were more equipped to care for her life-threatening condition- it wasn't even known if she would make the flight to the University of Arizona in Phoenix or once there make it through the surgery itself. I remember staying up all night long (it was a Wednesday) praying, playing the piano, hoping for a miracle- somehow she made it through the flight and the surgery. The doctor's of course were hopeful- my mother was on the next flight to Phoenix to be with her parents, over the next 3 months my mother and her 3 other siblings took turns spending time with my grandparents- my grandmother would have her ups and downs- she was breathing on her own quite quickly, but remained weak and unable to walk or communicate for a long time- the doctors convinced my grandfather to place a G-tube as it would only be temporary until she recovered and re-learned to feed herself, it would be removed prior to her discharge to home. She began to speak a few words, they didn't always make sense, but it was progress, PT began to work with her, she was able to 'stand'- in my grandfather's eyes she was getting better. My mother and her siblings decided that it would be in my grandparents best interest to get them home, so in April she was discharged to a long term care facility here in Idaho closer to the family.
I still vividly remember that tour of the facility the week before she came 'home' the facility seemed nice- the staff appeared caring- her room would actually be with a family member- a second cousin that had also suffered from an aneurysm a few years earlier- her husband was there with her daily, that was somewhat comforting, my grandfather would have someone that he knew, so would my grandmother- this other woman- I had met her a few times in the past- she was up walking with assistance, she didn't know who any of us where- she didn't recognize my grandfather or my mother or any of her siblings- these were people she had known all of their lives- that made me a little nervous- she was moody and aggressive- that was not how I remembered her, maybe it was just a bad day. The next thing that I noticed about the facility was that there was a beautiful grand piano in the lobby-I envisioned my grandmother sitting on the couch or in one of the other chairs in the room while I played for her- my recital would be coming up in a little over a month- if she wasn't able to attend, I could just come there and give her a private concert. I had all these big plans, I had my driver's license and I could drive on my own to visit with her and talk with her the way we used to- then she came 'home' the following week- I was there with my parents, my grandfather, my mom's youngest sibling and his wife and their oldest son- my cousin, 4 years younger than me. We were all so excited- my dad and I were the only ones that hadn't been down to Phoenix to visit her while she was in the hospital- I walked into the room- I had seen photos that my mom had brought back from previous visits, I knew that grandma didn't have much hair- they had had to shave it for the surgery- but in the pictures she usually looked awake and 'happy' sometimes smiling. This time she looked small, frail, pale- scared- I had never seen my grandmother look scared ever in my life, she looked confused, almost angry. She didn't recognize me, my mother had to introduce me to my grandmother- and she just looked at me with this blank stare, she wasn't looking at me, she was looking through me. Then I looked around her room- there was a feeding pump hooked up to administer continuous feedings. There was a catheter to drain her bladder. There were elastic bands tied to the side rails that she began to play with- tie into knots.
Then she started swearing- words that I had NEVER heard fall from my grandmothers lips. She noticed the shocked look on peoples faces and then made this face like a child would when they realized that they did something that they shouldn't have- then my dad asked her where she learned words like that, and she said them again and giggled- it was a game- it was at that time that I slowly began to realize that she wasn't really my grandmother- sure it was her physical body, sort of, but for the most part her soul had left her body in February- this was just a small bit left that hadn't been let go of by the family. I had to get out of there, I couldn't let my grandfather see me cry- because he was still under the illusion that she was going to get better, that she was going to wake up and walk out of that nursing home. I could see in her eyes that she was already gone- she was patiently waiting for everyone else to wake up and see that too. This person that laid in that bed would once in awhile let my grandmother come through- I got to see her once- and that memory will be with me in my heart forever- she slowly started to recognize who we were, but more importantly my special memory was the day she took my hands after she had been playing with string, again tying it into knots and ignoring me sitting beside her bed- she all of a sudden dropped the string and grabbed my hands and took them into hers she tried to sit up in bed to get a better look at me and my hands- she felt my fingers and my fingernails and smiled- she said 'oh sis, your nails' my mom stopped watering the plants and came over and looked at her mother holding my hands, rubbing my hands- I couldn't say anything, I was so shocked! You see, my grandmother's nickname for me was sis and I had always had a horrible habit of biting my fingernails down to the quick- I had stopped biting my nails suddenly a few months earlier and finally had fingernails- and she noticed- my mom answered her back that yes, I finally quit, and my grandmother looked up at her and then looked at me and just kept saying 'oh sis' and then my grandfather came in and she had to tell him that 'sis has nails'.
That was one of the last few times that I visited my grandmother at the nursing home-one the next times I had gotten a new watch, I had also always wanted to be an exchange student, I had worked very hard to get good grades to get a scholarship to do so- I finally got a partial scholarship for a summer program to go to Germany- my grandparents had always wanted me to go- our family came from Germany, they had been there a few times, when I told her about the scholarship she didn't seem to care, I tried to blow it off as a bad day- I had received my new watch as a gift to celebrate the scholarship- it was a Mickey Mouse with all of the world flags and it played 'It's A Small World' grandma looked at it as I explained what it did, I asked her if she wanted to hear it- she looked at me confused- so I pushed the button to start the music, she grabbed my hand and looked at the watch from where it was you couldn't hear the music, she was looking at the flags, then she let go of my hand the music was still playing and she was cocking her head as if looking for the music so I placed the watch near her ear- but far enough away that it wouldn't be too loud-she listened briefly then slapped my hand away. I asked if it was too loud or if it hurt her ear- she wouldn't look at me, she did the look through me thing again and ignored the fact that I was even there. The very last time that I visited she was out for a walk with PT when my family arrived, we met her in the lobby- the PT gentleman and the director of the facility asked if I had played the piano for my grandmother yet- I had not done so yet, so PT helped my grandmother to her wheelchair and placed her near the piano, my mom pulled a chair up beside my grandmother- I sat down at the piano beside my grandmother, I started to play my upcoming recital pieces, I got through the first one which was very short, a piece by Mozart, my grandmother appeared happy to be hearing me play- mom explained that I had played that piece for festival a few months ago. I then asked my grandmother if she wanted to hear another piece, she didn't answer but she smiled, so I took that as a yes, my mom also asked if she was feeling okay, if she wanted to stay out here or if was ready to go and lay down- a nurse had been standing behind us and indicated that she wasn't acting like she was ready to go, so I started to play my next piece- I was half way through the piece when all of a sudden my grandmother began to try to stand up from her wheelchair, I continued to play unsure of what she was doing or trying to do- then all of a sudden she reached for the keyboard cover and proceeded to pull it closed on top of my hands- the nurse came rushing up behind my grandmother for fear that she was going to fall, my mother noticed what she was about to do and try to stop her- my mom calling out to her mother made me aware of the cover quickly closing and I was able to move my hands in time that all that was heard was my the slam of the cover on the frame of the piano and previously played notes of my song along with my grandmother swearing 'well shit'. I just sat there staring at the closed keyboard heartbroken at what had just happened- I couldn't believe my grandmother the person that helped my mom and I pick out my first piano- my grandmother was the person that encouraged me to follow my dreams- how could she do what she just did, why would she do what she just did?
Then in July the day after my mom's birthday my grandmother was placed on hospice- she was moved to our home- into the room next door to mine- I was not at home very much during those 9 days that she was there- I stayed with my Aunt, my best friend, at my 2nd mother's house. I was there the day she passed away- we had a wonderful hospice nurse- she never sugar-coated any of it. She always was very truthful- she was able to get my family where they needed to be, she was able to get my family to the point of saying good bye and letting them know it was okay to let go.
I am seeing so many similartities between my grandmother and our friend- I just hope that it doesn't go that long- and most of all I hope that I am wrong and that I can write a post someday soon saying how wrong I am- at least for the sake of those a husband that is not ready to be alone with two children.

1 comment:

Irish Girl said...

I hope you can write that post soon too, but I agree, it sounds very unlikely. It doesn't do anyone any good to hide the truth. Most people have so little understanding of how serious these things are that they cling to every word their healthcare team says. If they hear hope, they hope. If they hear a harsh reality, they are able to prepare. Your NICU stories fascinate me. Thanks for sharing.