Question about the hospital term "Coding".... Please read & reply, if you can...

[danalyn]

Hello, I've posted about my mom in other MDC forums, never in "Grief and Loss" and perhaps this is NOT the right place to post. 

Anyway, to quickly sum it up, my mom is 60 years old and has had a medical "condition' that has completely baffled even the top docs, so I've been told.  Mom is a 16 hour drive away from me 2 states away.  Her mom (my grandma) lives nearby and sees her a lot, daily.  So everything I know i learn from my grandma.  Her condition has been "progressive", or however you want to call it.  She has slowly but steadily gotten worse, to the point NOW where she is in a nursing home, and has been declared mentally incompitent and I believe is a ward of the state.  She can do nothing for herself, cannot walk, can barely talk, and she has gotten down to 75 lbs.  I saw her last March ('10) and again this past Sept.  She had gotten so much worse just in that short period of time.  When I saw her in Sept, she was "moaning", screaming, crying.  It was heartwrenching.  Within the last several days she has been hospitalized for a UTI and I was told last night that she has "C DIFF" ........ my grandma described my mom as NOT eating, dehydrated, losing more weight.  After searching on the internet for information on C DIFF, an intestinal infection I guess, the symptoms described to me match the description of severe cases of C DIFF. 

well, to get to the point of this post, my grandma told me that the hospital called for a formal meeting with my grandma, and asked if she would like my mom to be "coded".  I kknow  they are asking if my grandma would like my mom put on artificial life support, should it be needed.  MY QUESTION HERE IS WHAT HOW BAD OR CLOSE TO DEATH DOES A PERSON "HAVE" TO BE IN ORDER FOR THIS ISSUE TO COME UP?  please tell me everything you know, don't be afraid to tell me if it's bad.....  and if my question doesn't make any sense, I'm sorry.  thanks!

[babygrant]

We have residents in the nursing home where I work who are still completely with it mentally who have chosen their levels of intervention (different codes.  ex. Level 1 = do everything in your power to save me!, level 2 = I want everything done to me except XYZ to save my life, level 3 = I don't want any lifesaving measures such as CPR or feeding tubes, but I wouldn't mind antibiotics and non invasive treatments, and level 4 = comfort measures only.  Every 2 or 3 months the nurses also go through all of the files and update patient information and levels of itnervention are ALWAYS gone over at family meetings.  So they might have just had a family meeting with your grandma or gone through your moms folder and wanted to see what level of intervention your mom would have wanted. 

I hope that helps you.  Many hugs to you! 

Originally Posted by danalyn 

Hello, I've posted about my mom in other MDC forums, never in "Grief and Loss" and perhaps this is NOT the right place to post. 

Anyway, to quickly sum it up, my mom is 60 years old and has had a medical "condition' that has completely baffled even the top docs, so I've been told.  Mom is a 16 hour drive away from me 2 states away.  Her mom (my grandma) lives nearby and sees her a lot, daily.  So everything I know i learn from my grandma.  Her condition has been "progressive", or however you want to call it.  She has slowly but steadily gotten worse, to the point NOW where she is in a nursing home, and has been declared mentally incompitent and I believe is a ward of the state.  She can do nothing for herself, cannot walk, can barely talk, and she has gotten down to 75 lbs.  I saw her last March ('10) and again this past Sept.  She had gotten so much worse just in that short period of time.  When I saw her in Sept, she was "moaning", screaming, crying.  It was heartwrenching.  Within the last several days she has been hospitalized for a UTI and I was told last night that she has "C DIFF" ........ my grandma described my mom as NOT eating, dehydrated, losing more weight.  After searching on the internet for information on C DIFF, an intestinal infection I guess, the symptoms described to me match the description of severe cases of C DIFF. 

well, to get to the point of this post, my grandma told me that the hospital called for a formal meeting with my grandma, and asked if she would like my mom to be "coded".  I kknow  they are asking if my grandma would like my mom put on artificial life support, should it be needed.  MY QUESTION HERE IS WHAT HOW BAD OR CLOSE TO DEATH DOES A PERSON "HAVE" TO BE IN ORDER FOR THIS ISSUE TO COME UP?  please tell me everything you know, don't be afraid to tell me if it's bad.....  and if my question doesn't make any sense, I'm sorry.  thanks!

[JamSamMom]

Danalyn,

  I am a nurse and have delt with this situation many times.  A "code" is a hospital term for when a patient's heart stops and we will try to start the patients heart again.  If a patient does not have brain function or has an irreversible condition the doctor will ask the family if they want to let the patient die naturally or have us give more drugs, shock the heart, put the patient on life support to try to save them.  It does not always work and after working on patients for a certain length of time with no signs of life we will stop because during a code we are doing CPR to try to get blood to the patient's brain and if the code goes too long....after 20 minutes or longer the patient is at higher risk to  suffer brain damage from the lack of blood flow.  That is why we do quit at a certain point....it has never been a money issue and we do not have death chambers in our country were we just let people die. 

  C-diff infection is usually caused by antibiotics which kill the good bacteria in your gut so the bad bacteria can take over.  It can dehydrate the patient and place stress on the heart.    It is contageous and can spread thru nursing homes and hospitals quickly.  If you want to PM me we can talk further and I don't mind answering your questions.  I am sorry you are going through this especially when you are so far away from your mom. 

Michelle

[lachingona1]

Originally Posted by danalyn 

. 

well, to get to the point of this post, my grandma told me that the hospital called for a formal meeting with my grandma, and asked if she would like my mom to be "coded".  I kknow  they are asking if my grandma would like my mom put on artificial life support, should it be needed.  MY QUESTION HERE IS WHAT HOW BAD OR CLOSE TO DEATH DOES A PERSON "HAVE" TO BE IN ORDER FOR THIS ISSUE TO COME UP?  please tell me everything you know, don't be afraid to tell me if it's bad.....  and if my question doesn't make any sense, I'm sorry.  thanks!

When my dad had a massive stroke and was in the hospital they called in the whole family for a formal meeting.  The word coded was brought up, they basically wanted to know if we wanted them to try and keep him alive.  They were telling us that the stroke supposedly left him without the ability to swallow and that it would never return therefore he would be on a feeding tube forever and it also left him without speech.  We knew he would never want that so we opted for him to die "naturally"   My dad was only in the hospital for a few days before this formal meeting was made.  Everything was so quick, and they were pushy.  It was a horrifying experience to see him die "naturally" it took 8 days. I think if the prognosis looks grim or if the person is not improving they want to know where the family stands.  I am sorry you are going through this, It is hard.

[coyotemist]

I'm very sorry that this is going on, you are far away and it sounds like there is no one close to ask these questions of.

As others have described above, a "code" or "code blue" is when someone's heart stops, they stop breathing, and we jump in to try to bring them back.  As Michelle described above, even doing CPR and everything that comes with that procedure doesn't guarantee that your mom will return to health.  It depends on what brought on the incident, how healthy the person was before, and how long the code lasts.  Very very occasionally, miracles happen and people get well, but that's less than 1% of the time.  I've seen it once, most of the time, though, the people do pass away.  They were very sick to start out with, and despite the fact that the family and friends are very sad, it was just their time, and the natural thing to happen.  I have a strong belief in life after this one, and so for me the grief is bearable, knowing that somewhere they are still there, but your beliefs may be different, which might color your personal decisions, and that's ok.

A "code" is not a gentle process, and if people do recover they have pain from chest compressions and other discomforts arising from these life saving measures.

There is no judgement if one decides to forego being coded and opts for just medical care.  There should also be no judgement if comfort care measures only is chosen. 

C Diff can be treated, and is successfully all over the US.  You mom's other conditions, though, sound as though they are less treatable.  During her healthy life, had she ever expressed end of life requests?  What would she want were she able to tell you? 

At this time in MY life (I'm 33 with 3 kids, 12, 9, 2) if I were to suddenly become unable to speak for myself, I would choose to be a full code, and choose life support only if it is likely that I would recover from my illness with a good quality of life.  If I'm going to spend the rest of my days on a breathing machine, unable to communicate in a hospital bed I would prefer to go.  Those are my wishes. 

There should be no "right" or "wrong" option, medical providers SHOULD (but don't always, remember they are human too) be accepting of your choices.  But be sure you are making the choices for the right reasons, not because it's too hard to let go of your mom.  The only time I feel that the family makes the "wrong" choice is when the choice is made for selfish reasons (i.e. the patient is dying, and rather than accept comfort measures-which really can make the patient feel better-they insist on invasive painful procedures that only extend life for a short while with no increased quality of life).  Sometimes it does feel as though you are pressured to make a decision (and this is referred to latchingona1) because the doctors believe that death is imminent and so a decision NEEDS to be made right away so they know how to proceed.  With that said, though, every single person is different.  I had a patient the other day I was sure was going to die in minutes, we were trying to prolong the process so the family could get there to say good-bye, the patient held on for HOURS, when I was sure they would pass.  Know that everyone's journey to death is as different as everyone's journey in life, and we medical professionals are just trying to do the best we can to care for them.

Hugs, I'm sure this is very very hard.

Cari (respiratory therapist)

[Katie T]

You have gotten great answers to your question. To be a full code or not is a personal choice but for me (and everyone is different) it would depend on the persons quality of life. Say I had a massive stroke and was a full code at the time but had no quality of life ( could not talk, feed myself, know what was going on in my surroundings) then I would not want to be coded ( if my heart stopped again) and would rather go home to be with Jesus. I have a advanced directive that states my wishes for if something ever happened to me so have thought a lot about this. I also work on a cardiac floor at my local hospital.

My thoughts and prayers are with you and your mom, what a hard time for your family. I hope you find peace with the choice you make. Don't feel guilty if you choose to not have her coded if it comes to that. Sometimes the greatest thing you can do it for someone you love is to let them go and "live pain free in a healthy body." Hugs to you.

[atnightingale]

Many above have described the process of a code above accurately.  I can tell you that terminology around "code status" can vary from state to state.  I did want to respond to your question about how sick someone has to be to make these decisions.  While it is sometimes true that a person in the hospital can be gravely ill and the medical team needs a decision now because the person is likely to "code" soon, more often the conversation is looking to the future.  

I used to work in the hospital but now work in home health and I can tell you that hospital stays are one of the times where medical staff and families often take stock of their goals for treatment for the future. There is no absolute right decision in these cases and the conversation doesn't always mean they expect her to die imminently.  So I would ask what prompted them to ask.  I see many patients like your mom.  THey and their families have made a variety of different decisions about code status based on their own personal beliefs.  Some people feel that they cannot NOT choose to do everything, even if those efforts are not likely to be successful.  My husband's grandmother was one of these and died in the ICU by choice.  She could not accept comfort care because it felt like "giving up." I know I would make a very different choice for myself, but it was not about my choice, rather hers.  Others will choose what we in my state would call Limited interventions, which means hospital care, possibly including heart monitors.  IV fluids, often antibiotics, but would not include Ventilators or ICU care.  These folks could choose to have CPR etc in the event of the heart or breathing stopping or NOT.  Some would choose care directed primarily at comfort with no attempt to do invasive interventions if their heart stopped.  

These are not easy conversations unless you are lucky or unlucky enough to have a family member to tell you every day that "I don't never want to be on some **** machine" or something similar.  Many nurses and doctors can be vehement about our own wishes because we have had a lot of time to think about the issues.  Most other people haven't though about it much and find it painful to do so.  So my advice is unless they are telling you that they thing she is likely dying now, take your time.. listen to what they have to say.. talk to your family and take the question seriously.  Ask as many questions as you need to, and then make the best decision you can.  That is all you can do.

I hope this helps a little.

[danalyn]

Just an update, coming back here (to MDC and this thread) after quite a while.  My mom did pass away on Nov. 20.  My relatives put her in a hospice, they put her into a  morphine induced coma.  Well, I'm not sure if she was actually in a coma, but she was quite "out of it".  I was told that she was in no pain.  I was able to hear her say "I love you" just a few hours before she died.  And my sister, my brothers, and my dad, along with my grandma and aunts were there when she left us.  My  husband and I and our 6 kids live 15 or so hours away.  She was completely unable to swallow.  A few months ago, I  had the opportunity to talk with a doc "in charge" of my mom's care from the U of Mich.  She told me that my moms muscles were all becoming tight and stiff.  Atrophy?  Apparently your throat is made of muscle and that caused her to lose the ability to swallow.  So she was on no fluids, no IVs or anything.   It is all so-so-so sad how this happened to her life.  She was always (until 20 some yrs ago, give or take) so young and pretty and full of life, hopes, dreams, ect. and she loved me so much.  what a great mom.  she loved my kids, and my bros and sister.  This disease (brought on by none other than the devil in my opinion) robbed her of  everything.  Since her death, in dealing with it, I am only able to find comfort in the fact that she is ALL BETTER NOW.  SHE IS WITH JESUS.  HE TOOK HER IN HIS ARMS THE SECOND THE LIFE LEFT HER BODY.  WHILE IT IS NOT HOW I WOULD HAVE HAD IT, HIS WAYS ARE BETTER THAN MINE.  thank you everyone who responded with info, love, & support.  I appreciate it!  And I'm doing fine,    joyfully anticipating the birth of our baby #7!  Need prayer/info for a successful VBA2C!  With God, all things are possible, so as I have the chance I'll be over in that forum.  :)

[Toolip]

I just came across this thread and wanted to tell you that I'm really sorry to hear about your mom.  It sounds like the end of her life was really difficult for her and everyone that cared about her.  I just wanted to say that you are in my thoughts and I'm glad your mom is not in pain anymore.

[ecoteat]

I am sorry for your loss.

[coyotemist]

I'm sorry for your loss, but glad you are coping alright.  Morphine is a blessing for those who are passing, it just makes the worst part bearable.