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Kharma711 Kharma711 (New Member)

When family fails the patient... it breaks my heart

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This is more a vent post than anything...

Had a patient today who any reasonable nurse would say should be on hospice.. trach, tube feeding, dependent on CRRT and IABP... screams in pain (silently) to any touch/turn... extremely cachetic with mutliple pressure ulcers... and sadly "with it" enough to beg you to stop hurting them...

The family refuses to withdraw care and after months in the hospital reluctantly agrees to a partial DNR that only means we can't do chest compressions but everything else must be done...

Multiiple discussions have been had with family, including his inability to be listed for transplant due to weakness, multi organ dysfunction and EVERYTHING resisitant infection... they insist we keep doing...

This type of patient breaks my heart so deeply.... even the ones who aren't "with it" enough to know... i feel the family is so damn selfish to allow their loved one to live this way...

If someone did this to me, I would haunt them when I passed out of spite... the interventions are no longer for the patient but for the family and I resent causing pain and suffering for NO good reason...

Ok thats all my thoughts... any commentary or ideas on how best to deal with a patient like this are appreciated... thanks for listening/reading.

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I've had similar situations as well. Sometimes, come to find out, there is a monetary incentive behind the family's motivation, and that's why they push to keep their loved one alive for so long. That, or they are incredibly naive and ignorant.

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That's rough. That's the primary reason I don't think I could work in the ICU. I might accidentally tell the family exactly what was on my mind and get fired.

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Some families just refuse to see what is in front of there eyes and accept it. Then you mix in religious beliefs, guilt, complicated relationships.

The worst thing to me is that it sounds like this person is trying to make their wishes known, but nobody but you is really listening.

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Ugh, I see this all of the time in PICU, and it breaks my heart, too. However, I do see where the families are coming from. I've literally had parents tell me, "I couldn't live with myself unless I felt like I'd done everything I could." Some are never able to accept that withdrawal of care can be the most compassionate, selfless, strongest thing that they can do for their child. I've seen far too many kids die a long, slow, painful ICU death over the course of several months. It's such a difficult situation on all sides.

Unfortunately, as nurses, we are usually the ones to bear the emotional brunt of these situations. We're often the ones who are performing painful tasks and procedures (like turns, pokes, and dressing changes). We're the ones who see firsthand how much pain we can inflict on these patients, and we have to smile and nod when families tell us what they want us to do.

Stay strong, Kharma! You're not alone.

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I could have written your post dozens of times over, it's one of the most heartbreaking things about the job. Coming home after a shift and feeling like all I did was prolong someone's suffering is so hard sometimes, one of the only things you can do is come here and commiserate with others that understand. You're doing your best, and I'm sure your caring comes through, even in the midst of difficult times, and I try to keep in mind that sometimes that's the best I have to offer. A gentle hand, a gentle word, and when possible guiding support for the family that can help them through what's certainly a difficult time for them as well. Best wishes to you and your patient that she may come to peace.

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Hang in there, Kharma. One of the reasons I hated the ICU was exactly this scenario. I hope that the physicians will circle the wagons and decide that care is futile (they can and they will...eventually). Do you have an ethics committee you can consult?

Otherwise, sending you hugs. I am pretty confident the patient knows you care.

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Working peds pulmonology, it was always hard for me when parents declined DNRs. I especially hated it when our SMA type 1 babies would be trached. Literally it was just prolonging death and introducing so much pain and risk of infection. Nevermind that these little babies have perfectly functioning minds, but their muscles are wasting away. I can't even begin to imagine how torturous it is for them (especially one rare case of a trached 3yo with SMA type 1 - she couldn't even blink, but would have periods in which BP would elevate and tears would just stream from her eyes).

I'd try to focus on the idea that the parents truly loved their child and simply didn't have the experience I did as a nurse. They desperately want more time with their family member. Or they simply don't understand that they won't ever get better. It's awful and sad and it's a bit of an injustice, in my personal opinion, that these individuals aren't allowed to die with dignity and grace. However, it's not my place to hold that against the family. It's just something for me to have sorrow about and then continue to be an advocate for my patient as best I can.

Something some hospitals have implemented have been grief or comfort carts. Instead of crash carts, these are brought to help families and patients navigate the dying process. I don't know how much it will apply to your specific patient, OP, but it is something you may look into. My cousin is a nurse in Florida, where she helped initiate a similar program. Giving families options to "do" something can help them make that choice to agree to a DNR.

New grief support carts bring support to palliative care families

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Many just aren't ready to let go. I had this situation last week. The husband was not ready. I sat with him, held his hand, let him cry. This was the love of his life for 65 years. I, as a nurse, know what her outcome is going to be. I just need to let the family come to that decision.

The best I can do is give them pain medicine and make them comfortable.

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After watching my mother do this with her mother (my grandmother), I had a long talk with everyone. My mother is not my medical surrogate.

In families like this, I think it's failure on the part of everyone. One of the wonderful things nursing has given me is the acceptance of the inevitability of death. My family? Not so much... My grandfather refused to make a will, refused to pick a grave site, refused to deal with death. To me, that's so bizarre.

Many of these individuals make a loved one swear they will do everything to save them. And in the end, it doesn't look anything like what they thought it would. And sometimes it's the other way around. The family can't let go.

It's why ERs and Primary care offices ask about a living will at each visit. There's absolutely nothing we can do. Lay people are what they are and their reasons for keeping their loved ones alive vary greatly. I've known families to keep reviving a loved one because they were all dependent on their social security check.

The moral of the story is: take control of your life while you still can. And if they don't, if they are scared to death to die or let a loved one call the shots, they may live and die to regret it.

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