Texans debate Futile Care Law,

Pediatric Critical Care Columnist · Apr 18, 2009

Janfrn:
What puzzles me, is why patients who are moribund and require less active treatment are ensconced in ICUs, with nurses burning out around them. My recall of the long ago days I spent around that unit, is that only acutely ill patients were admitted there, whose death was unexpected, or might occur if they weren't there.

Our unit admits kids with lethal genetic disorders who will eventually die of metabolic derangement, we intubate and ventilate them, we do CPR when we need to... because they're children. We've attempted CRRT on a 3 kg neonate. We cannulate kids who have been in cardiac arrest for 45 minutes and put them on ECMO. The ones who don't declare themselves by hemorrhaging into their brains will go on to return a month or a year later after having been in hospital their whole lives, in cardiac arrest again. We've cannulated some kids three times before they finally have a catastrophic bleed and are allowed to die. We transplant hearts into children who have already had multiple cardiac arrests and whose kidneys are completely shot, put them on powerful drugs that are excreted renally... then wonder why they have toxic levels. We've had one patient who received four liver transplants before finally dying of what we suspect was hemophagocytic lymphohistiocytosis but won't ever know for sure because the parents refused to allow a biopsy or a post-mortem. A lot of the time it feels like we work in Dr Frankenstein's lab. Oh, and once we have obtained a DNR, it's never quite that simple. It might be "do not do compressions or give cardiac push meds, but you can run a norepinephrine infusion at what amounts to a code dose", (I've given epi and bicarb to a kid who was a DNR, on doctor's orders, in an attempt to keep the heart beating until the parents could arrive, and I don't count that) or "do not intubate but do compressions and give cardiac push meds". Each "DNR" is customized to whatever our physician has agreed to with the parents.

You may have missed the thread about this case, which describes medical futility very well. http://www.cbc.ca/health/story/2008/06/04/golubchuk.html , http://www.cbc.ca/canada/manitoba/story/2008/06/12/cp-golubchuk.html , http://www.cbc.ca/canada/manitoba/story/2008/06/16/golubchuk.html , http://www.cbc.ca/canada/manitoba/story/2008/06/18/winnipeg-doctor.html , http://www.cbc.ca/canada/manitoba/story/2008/06/25/golubchuk.html

The issue I have with the potential Texas "futile" care law, is what the definition of those whose conditions which warrant end of life support, rather than heroic measures is? A patient with a diagnosis of cancer, wherein aggressive chemotherapy caused heart disease that could be reversed or treated sufficiently, who might have a few good years of quality life left, differs from a patient whose bone cancer has shown no signs of remission with aggressive multitherapies and he/she is racked with pain, begging to die. Those issues need to be outlined in any law wherein one physician makes the decision to have no CPR performed, and a copy of the signed order and patient's or POA's signed agreement for that need to be in the chart.

I really don't think that any potentially reversible condition would be considered for a physician-directed DNR. There are definite indicators of irretrievability (is that a word?) that most physicians would agree upon. Perhaps the solution would be to follow the same sort of process that is used to determine brain death. Two physicians, independently assessing the patient, with no affiliation to the patient, the patient's physician or the family and jointly defining the futility of continuing aggressive treatment. Would that ease your mind?

You story about the doctor's father was very poignant. Today it could be viewed as a physician-assisted suicide in a way, I suppose. Since you weren't there when anything was done, you have no way of knowing how the older gentleman came to deteriorate so suddenly and irreversibly. I hope you've managed to put your feelings of having failed him somehow behind you. You didn't fail him.

SuesquatchRN, BSN, RN · Apr 18, 2009

Jan,

You're my hero. I have never heard my beliefs about this issue expressed so eloquently and compassionately.

DeepFriedRN · Apr 18, 2009

What puzzles me, is why patients who are moribund and require less active treatment are ensconced in ICUs, with nurses burning out around them. My recall of the long ago days I spent around that unit, is that only acutely ill patients were admitted there, whose death was unexpected, or might occur if they weren't there.

At the hospital that I work at, a ventilator step down unit was just recently put into place. That means that all of those trached, vented pts who have multiple system failure and who will not get better, and are not placeable anywhere else (because they are either too complex or are not only on a vent forever but on dialysis as well and are too expensive) sat in critical care units for months and months because that was the only place that was trained to care for pts on a vent. So now they sit in our step down unit, qualified for it solely on the basis of being on a vent, for months and months, and basically go back and forth between critical care and step down as their bodies break down, being resuscitated again and again, until they finally wear out. Granted, this isn't every single pt, but there are a good many of them, and besides just the dollars and cents issue, the prolonged agony I see in some of these pts breaks my heart. I see the flaws in this law, but I have to agree with jan, I think working with this pt population makes me, at least, understand the thinking behind it..

Pediatric Critical Care Columnist · Apr 18, 2009

Interestingly (or oddly, perhaps) the one group of children we rarely see on our unit are the oncology patients. By and large when those children come to PICU, they're admitted for a specific, reversible problem such as tumor lysis or chemo-related right-sided heart failure; they're treated and transferred back out again in a few days. Only two of their kids have died on our unit in the last 6 1/2 years.

TuTonka · Apr 18, 2009

Change the venue to Canada where we already have universal health care and there is no bill presented to the family at the end of it all... In every ICU in the country there are patients at this very moment who have no possibility of recovering in any way, not just in a "meaningful" way. Patients who have no awareness of their surroundings, who have no awareness of the passage of time, no awareness of whose hands are turning, diapering, suctioning them or in many cases that these events are even happening. Their families have insisted they be kept "alive" for as long as science will allow, for reasons they aren't always willing to share. And the hospital staff provide mechanical ventilation, vasopressor support, artificial nutrition, dialysis, and any other litle thing that will keep the heart beating until it stops, then performs CPR for as long as physically possible before ceding the field to the opposition. Where is the dignity in that?
But you will never convince a certain portion of the population of that. One family member told me that if God had really wanted his son, then He wouldn't have allowed science to develop all the life-sustaining therapies we have today. And if we have all these wonderful tools at our disposal we darned well better use them on his son! The son has had more than a dozen prolonged cardiac arrests, numerous pneumonias and bouts of sepsis, prolonged apnea, decubitus ulcers, UTIs, diaper rashes, the whole gamut. He shows no evidence of being aware anyone is in the room with him. He used to cry when he was suctioned or had chest physio, though he hasn't been doing that any more for about 5 years. But he still has a heart beat.
I would argue that when you go beyond what is reasonable, into the realm of advanced intensive care, for a patient who will inevitably succumb to their illness, that we're in fact doing them a disservice. I can think of no worse torture than to be trached, ventilated, GT fed, turned, bathed and diapered by strangers, dialysed when my kidneys fail, my decubiti debrided daily causing great pain, sedated anytime I show any measure of displeasure at my plight. Especially if there's a part of me that knows I will die anyway.
In my world we already have that for every patient... they're called parents. But they are also not completely objective and will only hear what suits their construct of the situation.
Those are certainly worthy endeavors, but the largest portion of the health care dollar is spent in the first and last year of life... for advanced intensive care. An indefinable cost of this is the significant moral distress suffered by those who provide this care and the burnout that inexorably follows the demise of these patients. It might be difficult for those who do not work with this population to grasp that degree of distress, but I can tell you that a single recent patient situation on our unit caused six very experienced ICU nurses to leave for units where they would be insulated from having to live through anything like it again.
If you're excluding the Netherlands, Belgium, Switzerland and the state of Oregon from the list of civilized countires, then this statement is true. The Netherlands and Belgium allow euthanasia, while Switzerland and Oregon allow physician-assisted suicide. Despite the legality of euthanasia in Belgium, a recently published study suggests that it's used only very infrequently. The paper makes interesting reading. http://www.biomedcentral.com/1471-2458/9/79

You my friend can take care of me anytime. Your response was very insightful and impressive. Do you know AFM in OKC you two sound very much alike and:yeah: I would have her take care of me in a heart beat. Thanks for your input it was fantastic but you will pardon me if I choose NOT to live in your state/country?

TuTonka

Pediatric Critical Care Columnist · Apr 18, 2009

TuTonka, I live in Canada and I'm a career peds nurse... You wouldn't want me to look after you, but I'd gladly look after your children or grandchildren!

TuTonka · Apr 18, 2009

TuTonka, I live in Canada and I'm a career peds nurse... You wouldn't want me to look after you, but I'd gladly look after your children or grandchildren!

Awwwww come on where is your sense of adventure. LOLOL But yes I have two beautiful grandchildren and a great Grandchild and you can still take care of them LOLOL. :yeah: