Do you provide palliative-type care to children awaiting transplant?

  1. This question came up recently at work with one of our "chronically critically ill" children. The patient is waiting for a heart transplant and is in severe heart failure. The patient has been on our unit for three months and on the transplant list for two months. The months prior when the patient was home sound like they were miserable according to the family. I believe it too since now this patient is being managed on maximal HF support including continuous diuresis, milrinone & dopamine and is still miserable. The patient was recently intubated for an infection but is extubated now and the doctors were pushing to wean the patients ativan.

    My question is this. This patient is miserable. All day long. Wretching, gagging, thirsty but aspirates everything that goes in, irritable, restless, can't sleep, can't be awake, has very little quality of life. Family is at their wits end trying to keep their child entertained and comfortable and yet here we are taking away the ativan, which wasn't really doing anything anyways and keeping the patient in this miserable life. What about quality of life? I had been considering talking to our team about out hospitals palliative care team to see if they would have any recommendations for us but our doctors can't stand them so before I do that I wanted to hear what others had to say. Is this typical life for a two year old in heart failure? How can we manage these symptoms of discomfort better? Because lets be serious, every day without a transplant is one day closer to death. We cannot prevent that but don't we have an obligation to make these days as comfortable and manageable as possible?

    Thoughts? Experiences?
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    About umcRN

    Joined: Nov '10; Posts: 872; Likes: 869
    from US
    Specialty: 4 year(s) of experience


  3. by   traumaRUs
    The large peds hospital here (central IL) is a hospital within a hospital - tertiary care facility. They have both adult and peds palliative care services and yes, they would certainly be utilized for this poor child and their equally distressed family.
  4. by   smurfynursey
    Sounds like this child would defiantly benefit from palliative care. What does the doc say? I worked at an inpatient pediatric hospice and some of the docs from the Children's hospital near us were almost optimistic to a fault - It really doesn't benefit the family when all they hear is cure,cure,cure and a cure is not coming, is not attainable or not likely.

    has anyone on your unit taken ELNEC? It was required where I work and it was eye opening in many ways.

    I hope things get better for your little munchkin.
  5. by   umcRN
    Thank you for your experiences!
    I work in a pedi CICU and unfortunately our medical director dislikes the palliative care team and has essentially banned them from our unit. I don't know the details but there was a situation a few years back where the palliative team must have told a family one thing that was conflicting with what our docs said. He has said that the palliative care team does not "understand" cardiac children and that they are different from other chronically ill children. I have never seen them in our unit so the capacity of what they are able to do I don't fully understand. It's really sad because we get so many trisomy 13 & 18 kiddos too and some of their parents do choose palliative care but don't necessarily get the support they need. Ironic I think too since a good part of our population are hypoplastic left and right heart children and the only surgical option for them is considered palliative not curative.

    In any case I am going to try to pursue this further with our medical team. There is at least one ELNEC certified nurse on my unit and she actually attends the monthly palliative care team meetings so I am going to talk to her and see what she thinks of the situation and her thoughts on including our palliative care team in this patients care.

  6. by   NotReady4PrimeTime
    umcRN, I know I've said this before... Are you SURE we don't work on the same unit??
  7. by   netglow
    Are you guys a transplant hospital? Or did I miss that somewhere. If you are, it sounds more all about the money in transplant then with some of the docs, not so much the joy of giving that little one life, it's the procedure they want and the stomping ground rights they want sometimes.

    Little is known to most on the outside of this big business. It's all lovey-good as far as most "want to know". Big money goes into that marketing as well as into everybody's pockets except the donor's family - of course then it would be wrong... But, ish. On the donor procurement side (OPO), the corporate part of it is rather soul-shaking, to say the very least. Some people cross over at some point and never look back, they become almost sociopathic. I've met with the corporate side - can't be part of that.
  8. by   NotReady4PrimeTime
    Interesting that you should ask that, netglow. Some of the most wrenching and soul-destroying situations I've ever witnessed have involved transplant recipients - or candidates, to a lesser degree. The suffering experienced all around, by the patient, the patient's family and friends and by the staff members assigned to their care, is sometimes colossal. What is it that they say? "The transplant was a success but the patient died" (a long, slow, painful death). Don't get me wrong -I don't have a problem with transplantation itself, since my son is now well into his 25th year as a liver recipient - what I am concerned with is patient/donor selection. Some potential recipients are just not meant for a long life for a variety of reasons (like chronic renal failure, pulmonary hypertension or badly damaged lungs), so why does what life they have need to be so horrible?
  9. by   netglow
    I think we have the same concerns, pretty much. I was just talking about the front end, and certain motivations in those fancy corporate offices - wonder how those offices got so fancy..

    The "business" of transplant needs an overhaul.
  10. by   umcRN
    Interesting point of view.
    I am going to go out on a limb and say I don't think my hospital is there yet. We are a relatively new program, in fact at this point our surgeons are still sending out patients who need transplant but they think are too high risk for us to do. I have also not yet seen any child with several severe co-moralities be offered transplant as an option. Our transplant patients so far have been straightforward cardiomyopathies, myocarditis and complex congenital heart disease without multi-organ involvement. We don't do lung transplants and I have not yet seen anyone transplanted who had severe lung damage though we did have a kiddo with severe pulm hypertension d/t poor heart function who was placed on a berlin with the sole purpose of recovering his lungs, his lungs did recover over about 3 months and he was then listed for transplant, had a successful transplant, did come out on ecmo but weaned off in three days and was discharged a few weeks later.
    Jan I don't know if laws differ between our countries, but with the kiddo I described before when he went into septic shock a few weeks ago we were told by the transplant team that if he needed ecmo or dialysis to support his failing kidneys then he would no longer be a transplant candidate due to multi organ failure.
    Again we're new at this so I'm sure I don't know everything about it or what our program will evolve into once we get more eperience. From a nursing point of view however our nurses (and docs) are not used to caring for this chronically critically ill population and focusing on quality of life...sometimes I think these kids would be better served in heme-onc!
  11. by   NotReady4PrimeTime
    umcRN, it seems as though there are very few absolute contraindications for transplantation here. Active sepsis only means shifting the candidate to Status 0, meaning that they're still on the list but not currently in line. There's often a considerable difference of opinion between intensivist and transplant team physician as to suitability. When we think there's too many comorbidities and that the odds of a successful recovery are too high, they say, "Oh, no... that's not a problem. We can support them medically post-operatively." Of course when transplantation offers the only chance for survival, it should be considered, but given past experience there must be some rational thought given to what is probably a long, slow, torturous death post-transplant. I'm just a nurse, but I have a pretty good track record at predicting which kids will sail through and which kids will not. One of my continuing education goals for this year is to see if I can suss out the reasons why our infant liver transplant patients tend to have MANY complications and an extremely long PICU course. I'm not getting anywhere with it but it's still a goal!
  12. by   marycarney
    Interesting discussion. I have had several less-than-stellar interactions with organ procurement (when I was in the adult world) that has soured me on transplants to a degree. We have only just done our first transplant on our PICU (kidney from a live, known to the recipient donor). But I'm still a little squishy about transplant-related issues.