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

[Kharma711]

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.

[ventmommy]

And this is where our medical system fails patients. When further care is futile, care should be withdrawn and the patient should be placed on comfort measures.

[carolelainern, BSN, RN]

One of the hardest things about ICU nursing! I had one such patient who, even when the family had been talked into comfort care, did not actually want the patient medicated to be comfortable-they wanted other family members to come in and "see how he is"-think severely encephalopathic, in a lot of pain, striking out and kicking anything that moved near him. Thankfully the doctor put his foot down and told them in no uncertain terms that they were not going to make decisions that put the nursing staff at risk and made the patient suffer. It's so hard and it sticks with you! I have seen a trend lately towards more education for families on what DNR status means, and why it's a good choice. Ethics committees can help too, if a little too slowly.

[kat7464]

Totally selfish family, unable or unwilling to see the patient's perspective, which (hopefully) was expressed prior to this situation. Have been a hospice nurse for years and am always amazed at how reluctant families are to let go when all evidence (and the patient mind you) say otherwise. I understand their pain but death is a natural event, much like childbirth. Amazing how we fight it, refusing to hear any reasoning but our own. Sad...so sad.

[Nipper48]

Being able to extend life in these instances is one of the curses of modern medical care. If you suspect a monetary reason for prolonging treatment, take you concerns to your nurse manager. She should contact Risk Management and the Ethics Committee in your facility for guidance. Court action is an option in select cases, and I have seen that happen multiple times.

If you simply disagree with the family's decisions, it is not yours to judge anymore than it is our place to judge based on gender, race, diagnosis, or any other category. You focus on taking the best care of the patient. The family is not 'failing' if they are doing what they consider to be the best they can do. Grief and fear drive many decisions. The family members are in pain also. Everybody must live with their own conscience in the end, so you will often hear "We told them to do everything." We do not know their story, nor do they know ours. Take advantage of any Social Work Services or Pastoral Services available for the family. They can be tremendous assistance. These cases are multidisciplinary team issues - utilize yours to the fullest extent.

The hardest thing I ever did was discontinue care on my father. I knew it was hopeless and I knew what he told me he wanted. I knew I had been a nurse for 32 years and remembered all these patients. I did what he wanted. It was still almost more than I could bear. I felt tremendous pain for all the families I had judged, "Why don't they just stop this?"

If nothing else, teach all of your patient's about making an Advanced Directive and to choose their representative wisely. My father chose me instead of my mother or my older brother because he knew they could not do what he wanted, no matter how much they wanted to.

In the end, getting angry only hurts you and interferes with your ability to care for these patient's and families. Find you own best means to cope away from the bedside. Personally, I cried, I worked out - I prayed a lot. Find what works for you.

[emmjayy, BSN, RN]

Oh man. I can think of about a dozen patients I've cared for in the last couple of months who this post applies to. It is so heartbreaking and one of the most exhausting parts of my job.

I do try to put myself in the family's shoes. I know quite a bit about what constitutes a poor prognosis, how much suffering someone goes through in an ICU bed, etc., but to this day I do not know what I would do if it were MY dad or mom or spouse or sibling lying in that bed. I want to say that I'd do the right thing and make them comfortable, but it is so difficult to let go of that person! I can't imagine ever being ready to some day tell an ICU team that I'm ready to put my dad or my mom or my husband on comfort measures only. We see only a patient suffering... they see their dad who taught them to ride a bike, or their spouse that they fell in love with and raised children with and they just can't let them go. I feel a lot of frustration at times when I'm in these situations, but then I go home and thank God that I'm not the family member who has to choose what to do. It's awful all the way around.

[CampyCamp, RN]

This is what exhausted me right out of ICU.