Palliative Care in the NICU - Ethical Dilemmas: A Role for Paralytics & Who is the Patient?

On July 11, 2007 a neonatologist in the U.K. was cleared of misconduct in the case of hastening the deaths of two dying babies. In the final moments before the baby's death, Dr. Munro injected the babies with a paralyzing drug, pancuronium, at 23 times the normal dose to suppress agonal breathing.

This case being described as being "tantamount to euthanasia" is something to think about. It underscores many of the ethical dilemmas surrounding end-of-life or palliative care in the NICU finding the delicate balance between saving a life and merely prolonging a life until it's inevitable death.

Definitions
Palliative care are services that alleviate, lessen, or provide relief of symptoms which interfere with quality of life when curative treatments are no longer an option with a life-threatening illness.

Paralytics and Palliative Care?
My Palliative Care or End-of-Life background is in adult medicine, but the principles of 'doing no harm' and support someone, even a newborn, with comfort until the end of their life should be the same.

I don't remember paralytic agents being routinely used at the end of life with adults. I do remember an attending physician, a critical care doctor briefly sharing his own horrifying experiences under general anesthesia, anesthesia awareness. He described being paralyzed, awake and unable to let anyone know because of the medications he'd been given.

One of the concerns in these cases is that the two dying babies might have been paralyzed, still awake and unable to breathe. As Nurse Judy noted

"We have no way of knowing if those babies were suffering before he gave them the Pavulon, we have no way of knowing if they had any relief from suffering. They may have been totally aware of being unable to breathe."

Not a pleasant thought, to have someone suffocate to death because of medications.

According to the National Cancer Institute Ethical Issues on Last hours of Life, "paralytic agents have no analgesic or sedative effects, and they can mask patient discomfort." In a study done in the late 1990's in the U.K. looking at the practices surrounding withdrawing a dying child from a ventilator, a minority of the respondents continued neuromuscular paralysis after the child had been withdrawn. In a more recent BMJ article from 2002, that looked at the topic of whether agonal respirations are necessary, these physicians proposed that gasping respirations at the end of life should be treated and in rare circumstances "the use of neuromuscular blockade to suppress prolonged episodes of agonal respiration in the well-sedated patient in order to allow a peaceful and comfortable death."

Perhaps this is a difference in the training between the U.S. and the U.K, perhaps it is a difference in the research being done. I think most of all the case underscores the need for still more education in palliative care in the NICU setting. This training would include beneficial and effective ways of managing pain and symptoms in the final hours of life as well as developing standard protocols for NICU physicians to follow to allow for the peaceful and comfortable death.

Who is the Patient - the Baby or the Family?
Another issue in this case, is who was the patient...the baby being treated, or the parents who will be surviving the deaths. In both of these cases reportedly the mothers and fathers of the babies "fully supported the doctor's actions and were grateful to him."

Nurse Geena's comments in response to the parents fully supporting the doctor serve as a reminder to be thinking who is being treated.

Goody for them, but I just can't quite get it out of my mind that the "treatment" was done to comfort the parents and not the baby.

It almost seems that the parents, those who would be living on after the death, had become the primary focus for the doctor, not the dying baby.

Which is more harmful for the parents? Prolonging Death or the Method of Death.
How one copes with a death depends much on how the death was handled at the time. The ultimate outcome of this case will be the effect of these deaths on the surviving parents.

• Will they be more grateful that their baby's suffering ceased and the death was hastened?
• Will they be more harmed because the drugs used hastened their baby's death paralyzed their baby?

We may never know.

Other Bloggers' Thoughts:
Judy, RN. Pancuronium = Pain relief? For whom? Tigers Don't Jump Blog. July 10, 2007.
Geena, RN. On the verge of what society finds acceptable? Code Blog. July 10, 2007.
Kevin, MD. Prolonging life vs prolonging death. Kevin MD. July 10, 2007.

Sources:
BBC News. Doctor 'hastens babies' deaths.' July 5, 2007.
http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6273528.stm
BBC News. Doctor felt babies were suffering. July 9, 2007.
Available at: http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6276900.stm
BBC News. Baby doctor cleared of misconduct. July 11, 2007. Available at:
http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6291224.stm
Reid. M. When prolonging life becomes prolonging death. July 9, 2007. Times Online.
http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article2045207.ece
National Cancer Institute. Last Hours of Life (PDQ®). Health Professional Version. Last updated. June 6, 2007.
Hatherill M, Tibby SM, Williams C. March MJ, Murcoch IA. Withdrawal of ventilation from the dying child. Clinical Intensive Care. 1997. 8;5:222-227.
Perkin RM, Resnki DB. The agony of agonal respirations: is the last gasp necessary?
Journal of Medical Ethics. 2002;28:164-169. http://jme.bmj.com/cgi/content/abstract/28/3/164

Additional information:
Dyer KA. My NICU Baby is Dying: Now What? Available at:
http://www.squidoo.com/marchofdimes/mynicubabyisdying
Dyer KA. My NICU Baby had Died: Now What? Available at: http://www.squidoo.com/mynicubabydied/
Carter BS. Bhatia J. Comfort/palliative care guidelines for neonatal practice: development and implementation in an academic medical center. Journal of Perinatology. 2001. Jul-Aug;21(5):279-83.
Full article available at: http://www.nature.com/jp/journal/v21/n5/abs/7210582a.html
Carter BS. Ethical Issues in Neonatal Care. eMedicine. Available at: http://www.emedicine.com/PED/topic2767.htm

New Findings on Preterm Labor Meds: Mothers Receiving Magnesium Sulfate More Likely to have NICU Babies

A recent study due to be published in July’s "Green Journal" (Obstetrics & Gynecology Journal) found that newborns whose mothers had received magnesium sulfate were more likely to be admitted to the NICU than those whose mothers had received the alternative treatment (nifedipine). At this point, the researchers cautioned that the data did not offer a clear explanation for this finding and more research needs to be done to rule out other causes.

Deirdre Lyell, MD, a specialist in high-risk obstetrics at the Lucile S. Packard Children’s Hospital at Stanford, CA led the investigations that compared the use of magnesium sulfate with nifedipine for acute tocolysis of preterm labor.

Definitions

• Preterm labor – labor before 37 weeks of gestation (completed weeks of pregnancy).
• Preterm birth – a baby born before 37 gestation (completed weeks of pregnancy). Also called premature birth.
• Acute Tocolysis – the use of medications to delay or inhibit or stop contractions experienced during preterm labor. The medications relax overactive uterine muscles.

Main Study Findings
The researchers found magnesium sulfate was more effective in preventing delivery for 48 hours by quieting uterine contractions. But there were no significant differences in the ability of these treatments to delay delivery, in the gestational age of the newborn or in the birth weight of the infants. What was significant were the side effects experienced by each of the groups.

Two-thirds of the women on magnesium sulfate experienced mild to severe side effects including shortness of breath and fluid build-up in the lungs during the treatment. Other side effects reported with magnesium sulfate include vomiting, lethargy and blurry vision. By comparison, only one-third of the women on nifedipine experienced side effects which included headaches.

The side effects of magnesium sulfate are long remembered by the women who are on the medications. According to Dr. Lyell, "Women who have had magnesium sulfate remember it; they don't like it. Those who receive nifedipine don't feel as bad."

Take Home Message from Study
According to Dr. Lyell, there were no significant differences in relevant outcomes between the two groups studied.

What was significant, this study found, was the difference in the side effects experienced by the women, some of these were very serious.

You can read about a first hand account from Dr. Kristie McNealy on being in preterm labor and treated with both magnesium and nifedipine at the NICU 101 Blog.

First Hand Account:
McNealy K. June 29, 2007. More Side Effects with Magnesium Sulfate. NICU 101 Blog.

More Info on Preterm Labor and Preterm Birth:
March of Dimes. February 2006. Preterm Labor. Common Complications of Pregnancy. http://www.marchofdimes.com/pnhec/188_1080.asp
March of Dimes. February 2007. Preterm Birth. Quick Reference and Fact Sheet. http://www.marchofdimes.com/professionals/14332_1157.asp
Weissmiller DG. Preterm Labor. American Family Physician. 1999;59(3).
http://www.aafp.org/afp/990201ap/593.html

Sources:
Lyell DJ, Pullen K, Campbell L, Ching S, et. al. Magnesium Sulfate Compared With Nifedipine for Acute Tocolysis of Preterm Labor. Obstetrics & Gynecology. 2007;110:61-67. Abstract online at: http://www.greenjournal.org/cgi/content/abstract/110/1/61
Lucile Packard Children's Hospital. June 28, 2007. Press Release. Common Preterm Labor Drug Has More Side Effects than Alternative, Finds Study from Packard Children's Hospital and Stanford.
http://www.lpch.org/newsEvents/NewsReleases/2007/pretermLaborDrugs.html

Photo Credit: Adam Ciesielski. IV Drip - Intravenous Drug. Royalty Free Use.

What are the NICU Levels of Care?

It is likely if my youngest daughter had been born even 10 years earlier than she was, or born in a more rural setting that she would not be with us here today because she may not have gotten the treatment that she needed to support her heart and lungs (cardio-respiratory system) during the first few critical hours of life.

In our case, she was born at a hospital with a Level 3 standing for their Neonatal Intensive Care unit. In order to get from basic newborn care (Level 1) to the more highly skilled care unit they moved her from one room in the hospital to another.

Ultimately she ended up needing even more specialized care and was transferred to the regional Level 4 NICU that had the potential to deliver the highest level of sick newborn care.

Levels of Neonatal Care Units
The levels of care are used as a method of designating the care provided by hospitals for newborn infants. It is based according to the complexity of care provided, ranging from basic care or level one to the most complex care

• Level I - Basic Neonatal Care The minimum required for any facility that provides inpatient maternity care. The hospital must have the necessary personnel and equipment to

• Perform neonatal resuscitation
• Evaluate healthy newborn infants
• Provide postnatal care
• Stabilize ill newborn infants until transfer to a facility that provides intensive care.

• Level II - Specialty Care Nurseries In addition to providing all of the basic care listed above, Special Care Nurseries can

• Provide care to infants who are moderately ill with problems that are expected to resolve rapidly
• Provide care to infants who are recovering from serious illness treated in a level III (subspecialty) NICU.

• Level III - Subspecialty NICU's Care for newborn infants with extreme prematurity or who are critically ill or require surgical intervention.

• Level IV - Regional Subspecialty NICU's (Level IV is a designation about the Level II, only found in a limited number of the states).The Level IV NICU's are often found in regional academic medical centers and can provide the most complex level of neonatal care including
  
• Advance diagnoses
• Treatment of fetuses, preemies and newborns with complicated conditions.
  

Source:
Committee on Fetus and Newborn. Levels of Neonatal Care. Pediatrics. 2004. 114;5:1341-1347. Available online at: http://aappolicy.aappublications.org/cgi/content/full/pediatrics;114/5/1341

What's in a Name? NICU, NNICU, ICN, SNCN, SBCU, SCN, PICU

NICU, NNICU, ICN, SNCN, SBCU, SCN, PICU - What term do I use?

There are a variety of different terms used to describe the hospital care for newborns, sick newborns and premature infants (preemies).

Which term is used often depends on the age of the newborn or child, country of origin and the level of care provided being.

The following list is a list of the various different abbreviations I was able to find.

• ICN - Intensive Care Nursery, (neonatal) Intermediate Care Nursery
  

• NICU - Neonatal Intensive Care Unit
  


• NNICU - Neonatal Intensive Care Unit (UK)
  

• NNU - Neonatal Unit (UK)
  

• PICU - Pediatric Intensive Care Unit
  

• SBCU - Special Care Baby Unit (UK)
  

• SCN - Special Care Nursery (Canada)
  

• SNCN - Sick Newborn Care Unit (India)
  

If you know of others, let us know.




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