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Why Aren’t You Watching This?

I know I’ve written before about futile care and about keeping people alive past the time when they should have passed from this world. News flash: I’m going to write about it again. Right now.

When I first began nursing in an ICU, I was very naive. I remember one of my very first long-term patients. He was having a second heart bypass surgery. Or maybe it was his third. I remember thinking, “Just how many times can one have bypass surgery in one’s life?” Well, in this guy’s case – three.

The surgeons and perfusionist could not get him off of the heart-lung bypass machine after the surgery. He just didn’t tolerate it. This necessitated them bringing the patient over to CVICU while still on it. Then it apparently turns into a VAD – a “ventricular assist device.” The hope was that it would take some of the strain off of the ventricle so that it could rest and then we could wean him off the machine over a day or so instead of over a few minutes.

I remember how busy he was and how complex it all looked. He was truly the sickest individual I had ever seen.

Call it blind naive optimism or too many TV medical shows, but …

It never crossed my mind that he would not recover from this.

He remained on the VAD for a few days or so. When he came off the VAD, he still required multiple pressors. He was swollen, sedated, and still the sickest person I had ever seen. He then followed a course that I was to witness many, many more times over my career: trach, PEG, weeks and weeks in the ICU, and once he finally left ICU he would come back several times before finally dying.

One thing I remember about him was that we would feed him ice chips with blue food coloring. In that way we could tell if the stuff he was coughing up from his trach was aspirated ice chips.

It was. Every time. Blue phlegm.

The other thing I remember is that his wife came to see him every single day and would stay for a long time. Maybe she had no other obligations, maybe she did but made him a priority. I don’t know – all I know is that she was there.

This brings up a few things that I’ve been thinking about lately. I realized that for the majority of my patients and their family members, their loved one being critically ill is the first time they’ve ever seen anyone so sick before. Through hope and a misguided sense of medical science’s abilities to cure, they have unbridled optimism. They don’t see the same cases day in and day out. Just as when I was first exposed to someone so ill, they don’t realize that there’s really a chance that the patient won’t recover.

This realization has gone a long way towards clarifying the thought process that goes into making someone who is obviously (to me) terminal a “full code.” With the patient that I described above – I think it would have really shocked me if someone had suggested stopping treatment and letting him die.

The other thing that has been on my mind recently is the availability of those making decisions for the patient. We recently had a patient that was in ICU for over 3 months. It was clear to many of us nurses that she would never, ever leave the hospital (and turns out, didn’t leave the ICU for more than a day or so on transfer before she’d be back). The family was adamant that everything be done for her and she lay in that bed and wasted away day after day. Her labs became increasingly abnormal. She developed bedsores despite frequent turning and skin care. She was trached and was on the ventilator. She was fed through tubes. She closed herself off from almost everyone, even nurses that she used to smile at before. She would barely look at her family… but there’s the thing. The family. That family was there every single day to watch this unfold. Did that make it right? I don’t think so, personally. But it made it a little better in my mind. At least they were taking responsibility for their decisions. They were at the bedside every day, watching the patient deteriorate as the months went by. That really meant something to me.

Yet a few rooms down, there is another patient in a similar situation. This patient is also trached and is fed through tubes. It’s impossible to get him off the ventilator. The times that he has communicated with us through writing, he has told us that he’s ready to die. Ready for this to be over. But his family is making the decisions. They’ve decided that everything is to be done for this patient. If his heart stops, we’re going to pump his chest and try to get it restarted. Yes, the family knows his wishes – they’ve seen what he’s written. They won’t accept it.

The difference? The family very rarely comes to see this patient. Maybe once or twice a week for a few minutes. They’ve put this patient in hell and now they won’t watch it. They won’t watch what they’re doing to him. They aren’t present for the times he coughs and needs suctioning. They aren’t there to step out of the room so that we can clean up his incontinent bowel movements.

They just aren’t there. I think it’s one of the saddest things I have ever seen.

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Comments

You verbalized that so beautifully. I’m in nursing school and work as a tech on a med-surg floor. The difference in having family there and not is huge! Thank you for taking the time out to write about this! It helps to know that my feelings (as a learning nurse) are real and are seen by practicing nurses!

I know that is a frustration for us in the ED. The families come in, or worse, call us, and say, “Do Everything!”

The only plus side is we only have to stabilize them long enough to ship them up to the unit… (sorry about that)

Many times I have been shoehorned into an ICU/tele/stepdown admit by the family/attending only to have it refused by the on-call intensivist; “We don’t admit patients to die, here.”

At Metropolis Medical Center, we interns are DRILLED in pushing DNI/DNR. It is simply DISGUSTING when the family won’t take responsibility for grandma dying, thereby subjecting the pegged, trached, and foley’ed vegetable to the whims of medical students, eager to prove themselves, to save a life.

I often wonder what kind of life the caregivers live outside the hospital. Chained to the phone, forever schlepping the gomertose to Drs. appointment after Drs. appointment.

But who’s going to make the decision? We’ve GOT to take back medical decision making, and sheer F’ing brass balls away from the lawyers. What the hell good is a doctor, anyway, who won’t or can’t prognosticate? To metaphor the family from a position of stricken loss to a position of celebratory remembrance.

If you have to, tatoo your DNI/DNR on your chest. And for G-d’s sake, talk about it with your primary.

You just inspired a blog post, BTW.

I remember being told when a patient’s wishes were being overturned by family,

A dead patient doesn’t sue, families sue.

Isn’t that horrible? That was many, many, many years ago, but I’ve never forgotten it

OK, So maybe this is totally obvious but can I get a “heck yeah” on the statement “I could do without the out of town/state children.” I guess its guilt that drives them to press us to do it all for dear mom, do they think this proves they love them so. Do they think it shows they love mom the most when they complain the most?

Kim,

I heard the same thing the minute i stepped on ICU 5 years ago. It stuck with me as well.

Kim,

Just wanted to say I liked your observations. It is very sad that the one gentleman couldn’t have his wishes respected and to top it off the people insisting on keeping him alive can’t be bothered to sit and comfort him.

One thing to consider. Does the latter patient’s family have a place to stay while they are there? If you have another patient’s family occupying the waiting room, then there might not be a place for them. When my mother was ill there was a large Chinese family that had overtaken the only waiting room. When I went in there they let me know in silent ways that I was intruding. I had no where to be and when the nurses finally started complaining, I found a hospice to care for my mother. To this day it still makes me angry that the nurses would rather condemn me than see that I had a place where I could be there.

Sad situations sometimes have no solution.

This was well written and I share your feelings whole heartedly. I work at a hospital (that will remain unnamed) primarily for the elderly. My patients are usually late 60′s to mid 70′s easily. The have COPD, DM, PVD, CRI, Dementia, Alcoholism- you name it. They come in for a CABG, a AAA, whatever and some of them never leave. I wonder- hmmm… death by hospital? Some days it doesn’t feel good to come to work. So I struggle with what I am given and it breaks my heart when they ask me (when they can) “Am I going to go home” and I know they know the answer. So you are there for the family because it is usually them that is having problems believing that there is true love in letting someone’s suffering end. Even if you yourself have to suffer- can you love someone enough to take a little yourself and help their hurting stop? Or like you pointed out: do we lead people to believe we can do miraculous things? I think there are lessons out there- I know if I am fortunate to live to my 70′s I will carefully review what quality of life I have and whether I am willing to gamble that I can survive a major surgery and the icu before letting someone loose on my body. I would almost be tempted to make those who feel the need to “love me too much” personally financially responsible for what is done beyond what I have legally requested. We have a few dead million dollar men (a mild exageration)who have passed through our facility and I doubt their family is paying for it.

Yet another frustrating aspect of nursing. Sounds like they need an ethics meeting regarding that person.

I’m currently doing my prereqs to go back for an accelerated BSN degree. During my undergrad I worked as a CNA in a hospital and saw many of the same things you write about. Those exact problems (dying patients, families in turmoil and the intense knowledge of humanity one can only gain while working in healthcare) are the reasons I wanted to return to the field and become a nurse. Since I’m not in healthcare right now, I’ve turned to your blog to keep my mind somewhat involved in the real nursing world. Thanks, and I wish you peace with your career.

DON’T KID YOURSELF, A LOT OF THOSE FAMILIES ARE LIVING IN THE PATIENT’S HOUSE,CASHING SOCIAL SECURITY AND PENSION CHECKS.LET’S NOT FORGET THE DR(S) WHO TELL THE FAMILY NOT TO GIVE UP HOPE KNOWING THAT THE LEVO-DEAD IS MAXED OUT.

Thank you for your excellent post about the terminally ill and their families.

I am a relatively young man (39), I developed cancer out of the blue two years ago. Despite the superb care and extensive treatment from the hospital the cancer could not be contained and has now become widespread. The prognosis now gives me a few months more.

From the moment I knew I was terminal, I recognised the horrendous fights that could arise if my wishes were not expressly stated by me.

I therefore discussed my feelings with my family and partner together so, while some of them may not agree with me, at least there can be no doubt. I translated this into a document which I distributed to everyone concerned.

I am “fortunate” in that I have received very clear opinion on life expectancy, thus enabling some degree of forward planning. I have also drawn up my funeral plans, which have been discussed and agreed.

I did not intend this to be a me me me posting, but if you been told that you are terminally ill, I urge you to get this potentially hideous situation out of the way now. Draw up your will while you’re about it! I found it very difficult, but now that it’s done and dusted, I can get on with enjoying some quality time with those that I love and care about.

And the last word goes to the NHS staff from the various disciplines that I encounter, who are unfailingly calming, caring and professional. Cancer is such an aggressive disease and can be difficult to cope with, but people like you seem able to take some of the pain away with just a smile or a simple squeeze of the hand

Thank you so much, you are all amazing.

Wow..this blog really touched me. Its so sad how people can just “throw” other people away and can’t be bothered. I’m currently thinking about a career in Nursing but I don’t think I’m emotionally strong enough times like those.

Down but not out,

Thanks for that. You seem to be, from your post, well-grounded in reality and very gracious, and caregivers can’t ask for more than that from their patients. People like yourself are always a pleasure to work with.

The patient *always* dies.

hello there
beautiful blog!
i’m a 30-year old md, a resident in anesthesia and intensive care in Italy. EXACTLY the same kinda things happen here… all the time… good to see we’re living the same experiences.



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  • profileI am Gina. I have been a nurse for 15 years, first in med/surg, then CVICU, inpatient dialysis, CCU and now hospice. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!

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