<p><a href=“KETK & FOX51 | East Texas News & Weather | Tyler, TX | KETK.com | FOX51.com”>KETK & FOX51 | East Texas News & Weather | Tyler, TX | KETK.com | FOX51.com;
<p>Pretty heart wrenching story. This was often an issue in my career in end of life situations where the only thing to “turn off” was IV hydration and/or nutrition. Families would beg us to put their loved one out of their misery with a lethal dose of morphine.</p>
<p>So, so sad!</p>
<p>I’m confused about that little girl’s health state when the parents decided to withhold further treatment. On the blog (now I can’t find a link and anyway we can’t link to blogs) the parents say that their daughter was treated and she regained her sight. She might never have been able to have her intubation tube removed, she had seizures, she was unlikely to survive a year. So her health was dire, but it’s not like she was in a coma or a persistent vegetative state or anything. She was conscious and seeing, and she was able to experience starvation. So… why was euthanasia the right choice, even a quick euthanasia?</p>
<p>^^^^If I understand correctly, the child doesn’t have to be in a coma or PSV to cease all treatment if you can document that they are terminal. There is no requirement to sustain tube feedings in hospice, as far as I know. </p>
<p>I assume that parents choose to forgo any life support for their child because the child either has no life at all (they’re brain dead, or in a PVS, or in an irreversible coma) or their life is so painful and awful it’s not worth living (some excruciating cancer or something). </p>
<p>What I read didn’t make it clear to me that this little girl’s life was no longer worth living. She was conscious-- that’s why depriving her of nutrition was so awful to watch and presumably more awful to experience. I’m not saying that what the parents did was illegal, but I am wondering why we should make it easier.</p>
<p>
</p>
<p>She wasn’t intubated.</p>
<p>I’m trying to find information referring to the child improving to the point where she regained her sight, but so far haven’t been able to. </p>
<p>I read it, I think on the blog, and now I can’t find it. Possibly it was taken down. But the page I read had the word “intubation” misspelled as “incubation.” </p>
<p>Or maybe I’m hallucinating. </p>
<p>The family describes their daughter, as she was dying, being “confused and delirious.” Again, that suggests she was conscious. You can’t be delirious unless you have some consciousness.</p>
<p>My 89-year old father was killed by hospice via starvation. The rules for hospice were no medication other than painkillers, and no feeding unless the patient asked for it. So they drugged him up with pain-killers 24/7, so that he was asleep 24/7 and could not ask for food or drink. He was dead in 3 days.</p>
<p>^^^^So sorry to hear that. It sounds like dehydration was the likely culprit since it usually gets patients quicker than starvation. I’m not a hospice nurse, but I’m thinking 3 days sounds like the normal time frame for an already compromised patient. I am surprised the little girl in question lasted 9 days with no IVF as the article stated. </p>
<p>Post like yours illustrate that this subject can be really controversial. I have had patients’ family members scream at me because I told them I couldn’t overdose their loved one with morphine. If a patient was in pain or distress, we would certainly give doses intended to reduce their pain, and we had to tell the families that respiratory depression resulting in death was a possibility if the patient was DNR, but we couldn’t purposely overdose a patient intending to kill him. If there is nothing to “unplug,” and the patient or POA wants to let go, all that’s usually left is IVF or nutrition. At times I felt like my hands were tied. I’ve also known nurses who would go ahead and give as much morphine as possible, hoping to hasten the end, and it certainly can work. But most nurses I knew either had an ethical problem with doing that or a fear of litigation/losing their license if after the fact someone in the family changed their mind and decided to cry foul.</p>
<p>On the other hand, I’ve had patients’ family members scream at me that we are starving their loved one to death after only a couple of days without food (required for certain conditions). They don’t understand that often a patient’s hunger mechanism shuts down in severe illness and they are not starving, certainly not after only a couple of days.</p>
<p>This is why end of life care can be so difficult and why you’ll see burnout among the medical professionals who do this.</p>
<p>MODERATOR’S NOTE:</p>
<p>Links to or excerpts from blogs are not permitted on CC.</p>
<p>Thanks, Nrsdb4. Dealing with end-of-life is very complicated, but in the end I decided they did the right thing.</p>
<p>Regarding the story, I’m not sure euthanasia is really needed. While it was no doubt extremely difficult to go through those 9 days, the little girl was probably not in any pain. It would be easier on me that she go the way she did, rather than by an affirmative act, but obviously that is a personal preference.</p>
<p>Bay, we never quite reached the point of hospice with my dad, but they were waiting in the wings. He passed before we got that far. </p>
<p>Your description of your father’s death actually sounds like what we understood would happen. The point of hospice is that we’ve given up on curing the disease, and turn all our attention toward comfort care. So it makes total sense that they took him off all meds except pain killers. Pain killers aren’t just for killing pain, they help with other discomforts of dying. For example, if the person is struggling to breathe at the end, morphine can help ease a feeling of suffocation.</p>
<p>Regarding no feeding, the literature that we were given says that as the body is preparing to die, it’s natural for eating to stop. Nothing tastes good, and swallowing can become difficult or impossible. Appetite often vanishes. We heard that sometimes well-meaning family will try to force food on the dying person, which can make them very uncomfortable if they eat it. So we also were told that food would be on request only. My dad, who wasn’t on hospice, didn’t eat anything for 3 or 4 days before he died. No one withheld it, he just was no longer interested. </p>
<p>
</p>
<p>All true, and something many families nevertheless absolutely refuse to believe. </p>
<p>Nrdsb4, one hospice worker told me about something she called “comfort eating,” In which the dying person is given a tiny, tiny piece of food just so they can taste. Think a piece of chocolate half the size of a pea. This gives the person some pleasure without putting demand on the body to digest food. She said it can be a beautiful way to interact with a dying loved one who can’t or doesnt want to eat. </p>
<p>I’m still confused about the health status of the child. I understand that when people are in the last stages of the dying process, actively dying let’s call it, their body shuts down and they don’t want to eat. But while this child was very sick, it doesn’t sound to me like she was in the last stages of death when the parents stopped the feeding. So that would make it more likely that her body did want food and she wasn’t getting it. But that makes me wonder why the parents stopped the nutrition in the first place. </p>
<p>Let me make an analogy. Suppose we have a patient with a terminal cancer. This person almost certainly won’t make it another year. But that doesn’t mean they won’t suffer if you stop feeding them today.</p>
<p>These parents are making the case that in the situation they were in, they should have been able to give their daughter a lethal dose of morphine. I’d like more information about the situation they were in, before I give permission to anyone in that situation (whatever it was) to euthanize.</p>
<p>^^^^We don’t really have all the information about the child’s medical situation to know whether or not we would personally agree or disagree with their decision to let their daughter go. My first thought when I read this was WTH?!?! However, the ethics committee at the hospital did have her medical records at hand when they agreed that the parents’ wishes should be respected, so I have to think there were some factors at play which might change my mind if I knew them.</p>
<p>Personally, it would be pretty difficult for me to purposely overdose a child with morphine even if her parents were on board. I think a lot of nurses would have a hard time with it as well, but there are a fair amount who support the concept of euthanasia.</p>
<p>Ordinarily I don’t think it’s right to pry into the terrible details about a toddler’s last days. In this case, though, the family has set up a foundation to promote their idea that they should have been able to administer a lethal dose of morphine, so I think I’m justified in trying to understand exactly the character of the life they wanted to be able to end, and that they want other families to be able to end. As you say, Nrdsb4, there might be factors that, if I knew them, would make me agree with the family’s proposal. Right now I don’t even know what it is.</p>
<p>^^^True. What we do know hasn’t been well articulated, imo.</p>