8/5 - Encouraging Message - The True Rewards of Saving NICU Babies

Today's message of encouragement quote comes from NICU Nurse, Marcia Kilpatrick.

There is no black and white
here in the intensive care nursery.

Go ahead
and spit out your dismal statistics,
but the real truth
is in the toothless smile of the baby
anyone else would have given up on.

It is highly 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. The survival statistics for her condition (PPHN) at that time were much worse.

I am grateful for the care that the NICU staff provided my daughter. I am thankful that we lived near a Level 3 Neonatal Intensive Care Unit so she got the treatment and the advance level of care that she needed to support her heart and lungs (cardio-respiratory system) during the first few critical hours of life.

The True Rewards
This quote was a good reminder for me as a healthcare provider and as a parent. Sometimes the greatest rewards for what we do in healthcare and what we do as parents, comes from the most unlikely places. In the case of healthcare, the rewards come from our patients, in the case of being a parent--from our children.

About the Quote
This quote was one that I saved from a blog posting from June. Unfortunately, Marcia has since decided to take down her Ants Go Marching Blog. She is still blogging for the Columbus Parent. You can read her blog entries under Ants Marching.

Source:
Kilpatrick, M. What I Do. Ants Marching Blog. June 2006. Previously Available at Marcia Kilpatrick Blogspot.

Photo Source:
Denz Zani. Baby Face. Royalty Free Use.

Teaching Students to Write Stories out of NICU Experiences and Devastation

I have always been a believer in learning from the losses and the challenges that one faces in life and then using those experiences to help others facing similar crises, but are earlier in the process.

Kate Hopper has taken her own experiences as a NICU parent to a new level. She used her own NICU story of a preterm birth due to preeclampsia and the stories of other NICU parents and loss.

I was very impressed with her blog entry on heartbreak and hoping that I read this week. She shares her lesson plans to include two stories of heartbreak with her students in her "Mother Words" course at the Loft Literary Center in Minneapolis.

Her selections for the week included Susan Ito’s "Samuel" and Suzanne Kamata's "You’re So Lucky." Kate writes that she "chose these pieces to spark discussion about point of view, emotional distance, and writing about heartbreak." Her goal in sharing the stories was to teach her students how to write "heartbreak without sentimentality, craft stories out of devastation."

Learning from NICU Experiences
In the graduate course that I taught last Spring on Grieving Family Systems, I had my graduate students read the formal research papers that I had written on Identifying, Understanding and Working with Grieving Parents in the NICU to give them the perspective of grief in the NICU parents. One of my students was a former NICU nurse, who found the information invaluable.

The older I get, the more that I believe we are given these experiences to learn from and then to turn around and teach others from our losses. Perhaps this is one of the better ways of making meaning from the loss.

Sources:
Hopper K. Heartbreak and Hoping. Mother Words: Mother's Who Write Blog. July 25, 2007.
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40.
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network. May/June 2005; 24: 35-46.



Photo Source: Nadya Smolskaya Paper Work. Permission to Use.

The Distress of the NICU Parent - Each Person Only Knows His or Her Own Pain

There is an expression about not judging a person unless you have walked a mile in his or her shoes. I think this is much the same when trying to understand the grief and pain felt by a NICU parent when trying to make the best decisions for their NICU baby.

Today, Anesthsioboist "T" shares her views on the Limits of Viability in her blog.

I wish people wouldn't pass judgment on parents who ask for everything possible to be done to save their children.

I wish people wouldn't pass judgment on parents who ask that their children be left in peace if resuscitation appears futile.

"T" reflects on a one of her very difficult experiences as a medical student and a more postive experience as an Intern and Mother with her own daughter. She cautions that the first story may elicit a strong reaction from some. (I would caution parents before reading the first part that "T's" reflections are more geared for professionals, who must deal daily with difficult life and death situations.)

NICU Parents experience a wide range of distresses. Many want absolutely everything done to save their child. Others are able to help their child let their child go if care appears to be futile. It may be difficult for people to understand either of these points of views.

After reading T's post, a quote from Paulo Coelho comes to mind:

We can never judge the lives of others, because each person knows only their own pain and renunciation.

It's one thing to feel that you are on the right path, but it's another to think that yours is the only path.

Paulo Coelho

Other Ethical Sources:
Carter BS. Ethical Issues in Neonatal Care. eMedicine. Available at: http://www.emedicine.com/PED/topic2767.htm
Dyer KA. NICU from the Nurse's Perspective.
http://nicuparentsupport.blogspot.com/2007/07/nicu-from-nurses-perspective-when.html

Sources:
T. The Limits of Viability. July 17, 2007.
http://anesthesioboist.blogspot.com/2007/07/limits-of-viability.html

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

NICU from the Nurse's Perspective - When Everything Changes in an Instant

This is how it is [in the NICU]...
Everything changes in an instant.

Joni McGovern
12 year NICU Nurse
UCSF's Intensive Care Nursery

This quote sums up life for the NICU Nurse and for the NICU Parent...how one minute you are going along with a normal pregnancy and the next you are in the NICU.

NICU Nurses - Providing Special Care
Chris Colin, author of the On the Job series published for the San Francisco Chronicle, emailed me about an article he had published today. It is a profile on the life of several NICU nurses from UCSF's ICN (Intensive Care Nursery) - located at the very top of the hospital on the legendary 15th floor, home to 50 tiny beds.

As any NICU Parent can tell you, NICU nurses are a very special 'breed' of nurses. We discovered this to be true in our daughter's case. To quote the article,

A [NICU] nurse can fight desperately to save the most fragile human life, and indeed do so for the time being, but turn right around and understand that resuscitation might not be the right decision when the next crisis comes.

It takes a very special medical professional to understand that "resuscitation might not be the right decision when the next crisis comes."

Understanding that Saving a Life isn't always the Best Option
Quality of life was a big issue that I dealt with as a physician caring for older patients with chronic illness, for hospice patients and for those at the end of life. Quality of life is now a major ethical dilemma in the NICU at the beginning of life.

The number of premature births has increased along with the technology to keep younger and younger babies alive. Another of the NICU nurses, interviewed noted:

Some babies aren't meant to live, and it's ultimately a good thing that they don't.

Melitta Hernandez
8 year NICU Nurse
UCSF's Intensive Care Nursery

The ethical dilemma facing neonatology (study of newborns) is that with the technology and the increased number of babies surviving the first few months means there are more children now facing "a lifetime of disability, stunted development or other health issues." So there are times when in the NICU "resuscitation might not be the right decision..." Of course these words may not be comforting to the NICU parents of the tiny premature child.

I don't know if anyone knows the right answer to this unhappy dilemma. Obviously much depends on your perspective...if you are the NICU parent or the CEO of a health care company providing medical insurance.

More Readings:
Carter BS. 2006. Ethical Issues in Neonatal Care. eMedicine. http://www.emedicine.com/PED/topic2767.htm

Source:
Colin C. ON THE JOB: Saving babies: It's not a TV show but these nurses' jobs actually are life-or-death. SF Gate. July 2, 2007. Available at: http://www.sfgate.com/cgi-bin/article.cgi?f=/g/a/2007/07/02/onthejob.DTL

Photo Source: Kumar Murukan. Just before. Royalty Free Use.