Sad cases

[AlisRN]

I currently work in a LTACH. One side of my floor has an average of 18 patients at any given time - 17 of whom have tracheostomies and 100% of the trached patients are on ventilators for at least part of the day (usually nighttime, roughly 75% of the ventilated patients require 24/7 ventilation). There are 4 who are in a chronic vegetative state and typically have been that way for years. I believe all of these 4 have their years-long hospital stays paid for by the government (Medicare/Medicaid) while their 'loved ones' are at home banking Social Security checks and/or pension checks. All of these 4 DO react to pain, but that's about it. If you've ever seen a comatose patient with a look of horror on their face while you're working on them / suctioning them, you know what I mean. These are the saddest cases I've ever seen - WHO is looking out for their best interest? Shouldn't SOMEONE? I mean, I probably have a better chance of winning millions in a lottery than to see any of these patients wake up and have ANY quality of life. Since family has no intent of allowing their family member's suffering to end, shouldn't someone investigate the fact that the person's social security checks are being used for themselves and government money is being thrown away for keeping these poor souls "living" with feeding tubes and ventilators? If these patients could wake up for 10 seconds just to say one thing, I almost guarantee it would be "Please, let me go in peace!"

I know I shouldn't get so involved in certain patients but it just seems like someone should take responsibility for them since their family members are using them as a paycheck. Can't the hospital social workers perform investigations and go to court to gain guardianship / become healthcare proxy? It just seems like more should be done to stop these patients from undergoing unnecessary suffering. What is your opinion / advice here?

Ali, RN in MA

[belgarion]

We had a LOL a while back who was, to put it mildly, a train wreck. Multiple CVAs, CHF, COPD, etc. Every time the doctor brought up the subject of hospice care or even LTC her daughter, who held her POA and son-in-law threw a fit and refused to consider it. This was mainly because they were living in Mama's house rent free in return for "taking care of her." Taking care of her basically meant shutting her up in her room all day and getting her admitted to the hospital when they got the urge to head for Shreveport or Biloxi for a week or so.

You see, Mama's will stipulated that all her assests be sold off and divided equally among her four kids upon her death. As long as Mama stayed alive and out of LTC (medicaid would have gotten the house) the two parasites had a roof over their heads and food on the table courtesy of Mama's social scurity checks. Of course the other three kids weren't any better because they allowed this to go on. Mercifully she passed away a couple of months ago so the parasites will have to find a new way to finance their life styles.

[MissBrahmsRN]

patientson, i have to say your post gives me hope that there are more caring families out there than i have seen of late. a while back i had a husband who wanted his wife alive "cause her parents will cut me out of their will if she dies" it was awful. and the physician double-speak you bring up is very very real. many times i have had the physician come up, tell me, "yeah, there's no hope." then go in and tell the family, "well, things are looking pretty good here, you never know what can happen blah blah blah..." then come back out and give me the "this is pointless" look. it makes me so angry that we are not teaching doctors to tell the truth. they are so afraid of litigation (rightfully so in many cases) and we as a society dont do a good job of protecting them from silly lawsuits. i've heard of docs being called "Dr Kevorkian" because they gently suggested that perhaps the disabled nonverbal unresponsive 50yo with stage 4 decubs who is in the hospital for the 10th time in 18 months for sepsis could consider an out of hospital DNR order...then if the pt does pass the family sues because, "he was so young and had so much life ahead of him and you killed him." it breaks my heart. your dad is lucky to have you & your siblings. really lucky.

[Penelope_Pitstop, BSN, RN]

My personal philosophy is to tell people the truth as much as possible

I agree. I think this is a big chunk of our problem. People watch TV, surf online, hear stories about a friend of a friend's cousin's daughter who pulled through after the doctors had to remove her brain and wash it in bleach then put it back in through her nose...

Anyway, what they're getting from those sources is not truth. It started as truth, but through the magic of Hollywood or the little twist of facts here and there...well, people aren't getting the truth.

Also, many physicians resist having these discussions with family. Some of them are wonderful about it and bring it up when discussing goals of care. Then sometimes the hospitalist group has neglected to get that involved with the family because "the daughter is a drama queen" or what have you, and the neurologist comes, gives the dire news, and suddenly he or she is the bad person who is "giving up." (If only we saw accepting nature as not "giving up!")

I work in MedSurg, so I don't know about all of these things firsthand, but I do see a bit of it myself.

I've seen physicians who DO take the initiate to have the "we can treat her aspiration pneumonia but most likely can't prevent another case of it" (for example) talk and the patient's family pretty much FLIP OUT because oh my gosh you are going to kill Mom! You're going to starve her! Even after the doctor has given a graphic play-by-play of an arrest, code and subsequent stay in the ICU, the family still will not relent.

It isn't always money.

But I've heard families admit that they wanted to care for a complete patient at home because "we need her disability checks!"

It never ends well in those cases. But in ALL of these cases, the ones that really and truly have no hope aside from Jesus Himself coming down and healing...they never end well even if it isn't money.

[MTRN13]

I see two sides of this arguement from my point of view

#1 My Grandma was sick with pnuemonia, possible Colon CA (mass was so big they could not scope her to find out), and CHF. She was completely with it, and talking with us. My family had a really hard time respecting her wishes to take her off Bi-Pap, and not put her on a vent. The GP doctor was young and hopeful (He had never lost a patient at that point). He thought it would really help her. I do believe he was compassionate, and truly believed it would work. My Grandma was a fiesty woman. It took a day for my Mom to come around and let her go. Although the ICU nurses my Grandma had were the most cold and hardened people I have ever encountered. I think a more compassionate approach would have still worked better. My mom is still traumatized by those horrible nurses. I was shocked at their behavior. Such as getting in the face of the pulmonoligist face, and screaming at him at the top of her lungs in front of my whole familyg that she would not allow this, and she was a patient advocate. Completely inappropriate behavior. She used scare tactics to try, and influence my Mom. I have to say she was completely out of line. The other ICU nurse the day she passed told us to go away and just let her pass. I am a little bitter about hardened attidudes. We are still dealing with families, and thier emotions. My mom was crying, but completely in control of herself unlike my Grandma's ICU nurses. I did talk to my Mom, and showed her there were three possible ways this could go. First, that she could pass peacefully while surrounded by her family holding her hands on her terms. Second, put her on a ventilator and she would probably not be able to be weaned off and we would have to disconnect her at some point. Third, which I told her I was not sure was very likely it would help her to recover. My mom agreed to let her pass on her terms which was good since we all got time to say goodbye, and have private conversations with her.

#2 we have a pt. who is actively dying on our unit. It is a mom of a dr. She has a history that I could write all day about. Whenever we do blood draws we have to hold pressure for 20 minutes or she will not stop bleeding. Her son/doctor orders blood draws three times a day. He orders blood transfusions like it is going out of style. She is bleeding rectally, and from her bladder. We can barely get an IV started on her since her veins are so small, and inflatrate easily. All of her extremeties are cold and discolored. She is seeping fluid through her skin. It is horrible. She is flat out dying. We are a med/surg unit and wonder why she is not in a higher level of care like ICU because she is very unstable. She is on our floor because we have a VIP room that is really nice, and the only floor that has them. There is not a nurse on the floor that is wondering *** the doctor is doing to his own mom. BTW she is a chem code. We understand this is his mom, and it is hard to let her go. None of us would ever dare speak to him like the ICU nurses did to my family. We wonder how to get through to him that she is suffering while being supportive.

There are two sides to every story. Unfortuantely while at work we sometimes only see one side. I would urge you to be compassionate, and see maybe there is more to certain circumstances that you understand. I know with my Grandma it would have been easier on my Mom if the nurses had been more compassionate. It was her 4 doctors that really were outstanding, and compassionate. One of them even said "look she is really mad at you for not letting her make her own decision, and go make the most of the time you have" She really helped my Mom come to terms, and see something differently. It is sometimes about the approach we take. There are people out their that are selffish, and do not come to that realization wether it be for emotional or finacial reasons. I would hope that someone would give the end of my life a pause to think about it because they love me that much, and then lovingly let me go. As for the doctor's mom I understand that it is hard, but I would never have wanted to see my Grandma suffer that much. He is not there when we do blood draws that we have to hold pressure on for 20 minutes to stop the bleeding, or the pain when we change her decub wound dressing daily. He sees the women who raised him, and loved him unconditionally.

[MissBrahmsRN]

i can definitely see the 2 sides you are talking about. i work critical care & i have some thoughts:

1- those ICU nurses were completely unacceptable and need to go do something else or at least take a very long vacation. i have seen many ICU nurses get really hardened by the difficult death-day-in-day-out and hopeless cases they get...they dont mean it usually they just get numbed to it.

2- my hospital system has policies that dictate when patients are moved to various levels of care, it's possible for the MDs to override but it's very difficult. for instance, if they are getting more than a certain number of units of blood per shift they are moved from the floor to intermediate care and so on because the floor nurses have so many patients it's impossible for them to monitor lots of giving blood & give safe care to their other patients. bleeding from rectum & bladder is automatic critical care admit due to needing a monitor for frequent HR&BP plus serial CBCs plus lots of PRBCs. he means well but the doctor son is compromising the care of the other patients...i would not want her cause it's an unsafe assignment IMO. Also, due to an incident regarding standing orders for blood admin a few years back there is a policy that after a large # of PRBCs are given in a single admit (cant remember exact #) an automatic ethics consult is ordered to ensure that medical staff & family are acting in patients best interests.

3- i get annoyed when RN pull the "patient advocate" card on docs. i am all for advocacy but honestly, most of the docs are patient advocates too. there are definitely bad MDs out there who arent acting in patient interests but that holds true for RNs too.