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Extreme Prematurity, Extreme Hard-Heartedness

Posted by MDViews on September 11, 2009

Extreme Prematurity, Extreme Hard-Heartedness

The Daily Mail (www.dailymail.co.uk) from the UK reports that a woman in Great Britain held her baby for two hours until he died while doctors stood by, refusing to help. Why? Because he was born two days too soon. Guidelines in Britain hold that any baby born prior to 22 weeks not be resusitated because such resustation would be futile and the baby would die anyway. Little Jayden was born at 21 weeks and 5 days.

Even if the mother pleads for help? Which she did? Sorry—no can do—was the message to her.

Such is the effect of clinical care guidelines on medical practice, guidelines in Britain developed by a think-tank called the Nuffield Council on Bioethics, guidelines which extinguish human compassion from the care equation and provide cover for doctors to deny care and for the NHS to save money.

I find it difficult to picture an actual physician refusing a patient’s plea in such a circumstance. Theory is one thing. But standing toe-to-bed watching a mother holding her dying child and saying, “No,” chills my soul.

Extreme prematurity is not an easy issue. The earliest survivals on record occurred at 21 weeks 5 days and 21 weeks 6 days. Many times, the babies who survive such prematurity are left with lifelong physical and mental disabilities and always the cost of such care startles our fudiciary sensibilities. (Over a million dollars is not unheard of.) Thus, those who see no value in imperfect life or fail to see the worth of expensive life often carry the day in committees that set guidelines.

The article describes the British Association of Perinatal Medicine doing some fast back-tracking following this incident and her complaint, saying the guidelines were not meant to be a “set of instructions.” But guidelines soon become protocols and protocols morph into rules; rules which, if broken, require explanations and result in discipline for the rule-breaker. Rules which, if followed, save the National Health Service (NHS) millions of pounds.

Looking back on my long years of practice, I’ve been in similar situations. There have been times I’ve told mom and dad that resusitation would be futile and that they should cherish the short time they have with their child prior to his passing. I’ve never fallen back on a guideline to justify my actions, however. I’ve simply told the parents the baby would not, could not survive our best efforts. But I’ve also never turned down a request to help a baby if asked. And I’ve also made sure my statements were true.

One night in my residency, a young woman experienced preterm labor. She was deemed too early for intervention (but was close to the line) and went on to experience an unsuspected breech birth which I attended. Unfortunately, the baby’s head became stuck in the mother’s cervix making delivery impossible and death certain for the struggling premature baby. I cut the mother’s cervix to release the baby’s head, much to the parent’s relief. The baby died in spite of resusitation efforts. Although my superiors criticized this intervention, I can still see the faces of the parents as their baby struggled and wiggled, half in and half out. I’ve no doubt I did the right thing.

The medical cutoff for extreme prematurity is a target in motion, with modern technology resulting in survival of more and more premature babies. Such a moving target contradicts hard and fast rules and should require the best judgment of those physicians at the bedside. Doctors should bring together all the information possible—the stage of the baby’s development, the parent’s wishes, the availabiltiy of treatment, the doctor’s skills—then reach a compassionate and appropriate decision with mom and dad on board.

Matt Anderson

5 Responses to “Extreme Prematurity, Extreme Hard-Heartedness”

  1. Pam said

    Hi, Matt~

    I found out about your blog through Abigail’s recent blog post. Glad to find you online! I’m learning lots….

    Blessings~
    Pam (Joel’s step-daughter)

  2. Glenda said

    Hi Dr. Anderson,
    Wow – thanks for the quick and thoughtful reply and kind words. I agree that our thoughts and practice are very much aligned.

    My concern was that the medical personnel were maligned by the presentation of the case the presentation was from the mom’s perspective without the caregivers having a chance to respond, at least in the World press venue. When that is the case, sometimes the whole story is not told.

    A case in point: My mom was a vigorous, active 73 year old. She had been in TX to go hiking with my family. On flying home, she developed shortness of breath. She was evaluated and found to have a pleural effusion. The working diagnosis was a parenchymal malignancy of unknown type. I spent several weeks with her during this process, advocating her wishes. It was obviously inoperable and we could not begin chemo without a cell type. We had multiple unsuccessful biopsies of lung and liver. My siblings wanted ‘everything done’ and were extremely frustrated that treatment could not begin (without cell type). I left for a quick weekend at my home. I came back to find that my siblings had convinced her to submit to a bronchoscopy during which she hemorrhaged requiring intubation and paralyzation. By the time I arrived back, she had extubated herself and was adamantly insisting that nothing else be done. She had a stable few days and we discussed hospice – much to the dismay of the ‘everything done’ family contingent. She sent me out to buy her burial clothes. While I was at the store, family excitedly called with a diagnosis and the report that we could finally start chemo. She refused. It was an exhausting battle. She died peacefully, under hospice care, the next day. BUT — my siblings, to this day, tell the story as “she was denied care because she was elderly.” It is a complete mis-representation of the case.
    The point is this: the message varies depending on who gets to tell the story.

    Our private insurance companies and hospital corporations have been poor stewards the public trust and we have a health care conundrum. I’m not in favor of socialized medicine – I think very few health care professionals are. I agree it will be cookbook. The key issue will be having people who know how to cook in the kitchen. Put another way, have people who know the language tell the story. You’re blogging and participating in this story. Way to go!

    My original concern, with the original post, was that it weakens the public’s trust in their caregiver. That a physician or nurse would act on a 2 day rule is unthinkable, even if they would be disciplined. You wouldn’t do it. I wouldn’t do it. There are very, very few clinicians who would act in such an inhumane way. I want the best cooks in the kitchen – if the public is disaffected with clinicians, that door will be closed.

    Regarding Group B strep: I have not looked at the evidence on this and should not have spoken apart from the evidence. I was reflecting on the response of one of my patients this past summer. She had had multiple pregnancy losses and now had a lovely, healthy, term newborn girl. The baby died suddenly at 2 weeks of age – Group B Strep. Mom was advised that this was the probable cause for a previous fetal demise and a preterm birth experience. Grieving, but with hope, they have mass emailed a beautiful photo of their daughter with an over-layer of GBS information. The following is from that lovely memorial:
    “Not all babies exposed to GBS
    become infected, but, for those who do, the results
    can be devastating. GBS can cause babies to be
    miscarried, stillborn, born prematurely, become
    very sick, have lifelong handicaps, or die.”

    I’m afraid, I took her word for it, without doing further research.

    Godspeed your work and your writing.
    Glenda

  3. MDViews said

    Dear Glenda,

    Thanks for your comments. I am very sorry for your many painful losses. You bear a great burden.

    I don’t think we disagree as much as you think. Yes, we’ve all been there and I’ve been there. I’ve had mom’s hold their dying preterm infant without resusitation efforts because the baby was too early. But, prior to the birth, the situation was discussed, thought out with mom and dad and a consensus reached. In this situation, the reasons given the mom were that her baby was two days too soon based on a government guideline which is quite different from the conversations I’ve had with patients regarding extreme prematurity. Two days! Can you imagine being told that? Such news presents an arguing point more than information. No wonder she pleaded for help for her child!

    So my first point was the need for conversation and consensus with everyone on board. I doubt that was achieved in this situation.

    My second main point of the article was the guideline issue. As we tumble toward cookbook medicine, a doctor’s judgment will be marginalized and more such situations similar to this, only in other medical areas, will occur. Elderly woman with breast cancer? Treatment refused because a protocol says the cost-benefit ratio is too high. That’s where we are heading. That issue alone is worthy of comment, especially as we head toward a government system where the cookbook of treatment will be a medical bible.

    Also, preterm labor has been investigated for upwards of six decades and we are no closer to finding the cause or cure. We are aware of Group B strep, and rarely see cases of it in infants because so many women get treatment in labor. Group B strep is not a cause of preterm labor. Also, as you probably know, most of these extremely preterm babies are stillborn. Labor takes a heavy toll on the very premature.

    As with you, my supreme hope is in God. And I thank you for your thoughtful comments.

    Matt Anderson

  4. Hi Dr. Anderson,

    I have just read your article in World and feel the need to comment. This may be inflammatory – though it is not intended as such. For this reason, I’d prefer to do this through your blog rather than using the World editorial process.

    I am an OB nurse, doula, and lactation consultant. Prior to my 15 year stint in OB, I was a 15 year PICU nurse in two major mid-west tertiary care hospitals. I am a mom of three healthy teen and adult women. And I’ve had over a dozen miscarriages and mid-term pregnancy losses. Most importantly, I am a follower of Jesus.

    My husband (28 years) and I have struggled with end of life issues at all stages of the life span – we’ve lost pregnancies and my parents to cancer. Death is difficult – extremely difficult for those experiencing it and those left behind. But, respectfully, I’d like to disagree that the team in the delivery room manifested extreme hard-heartedness. Have we talked with the caregivers involved or is this from Mom’s memory – knowing that especially memories that are associated with extreme emotional pain are likely to be mis-remembered.

    As medical professionals, we’ve both been there. There is no real way to achieve informed consent in the presence of a dying child. The grief of a parent in the loss of a child is too profound. But the pain inflicted in resuscitation is real, and the indignity having the infant die outside of the mother’s arms would have been inhumane. Watching your infant struggle to breathe, I’ve no doubt that the mother begged for help. But would an ambu bag have been of help – the neonate’s lungs at that term are so fragile that pneumo-thorax would have been the most likely outcome. Not to mention the trauma from chest compressions… Sometimes our babies (my babies) die. I can rail against everyone I can think of, but it does not change the outcome. Could not this mother’s grief and anger fueled energy be better spent in researching and preventing causes of pre-term labor, such as the campaign for Group B Strep awareness?

    I agree that the guidelines for viability should be just that – guidelines. There are too many errors in calendar dates and ultrasound dates. But all of our practice must be based on the best available evidence. Informing parents in pre-term labor of what might happen if the baby if a baby is born alive – both in terms of resuscitation or the process of imminent demise – is best practice. Death is not easy, but as disciples, we have to admit that our life – our hope – is hidden in Christ, fully human in our resurrection with Him. As Christians, we should not ever hasten death, but nor should we cling to every possible high cost, high pain, medical straw for preserving life on this earth.

    Perhaps this editorial is less about the care at the bedside, and more about government funded health care and why we should avoid it at all costs. I’m not pro-government funded health-care, but don’t feel that emotional drama helps the debate. I’m hoping that, if it is about government funded health-care, there would not be the emotional appeal to pro-life sentiments of one such as myself. This was a tragedy for this mother and the many like her (myself included). Using the tragedy as a springboard for political commentary devalues the real need for helping prevent preterm labor and helping the grieving find hope.

    Best Regards,
    Glenda (Tom, husband and Josie, adult daughter)

  5. Lindsay J said

    That is by far one of the saddest things I have ever read or heard about before. Gestational age should be no factor in saving a precious life. Especially if the parents want their little one to be saved or atleast try in any way possible. It brings tears to my eyes thinking of that poor mother holding on to her precious child knowing that noone will help her.

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