Navigation Links
Hard Decisions for the Littlest Lives
Date:10/1/2008

Study finds poor communication between doctors, parents of gravely ill newborns

WEDNESDAY, Oct. 1 (HealthDay News) -- One of the most anguishing moments for parents is deciding on a course of action -- or non-action -- when their baby is born extremely prematurely or with potentially fatal or disabling problems.

Here, parent-doctor discussions regarding life support or compassionate end-of-life care are key. Yet, few result in satisfaction for the families. Instead, miscommunication and misunderstanding taint the final days or hours of a dying infant's life and their families' remembrances of them, a new study found.

"In the vast majority of cases, physicians and parents make decisions to some degree together, and we don't really have a clear understanding at this time about what things are most important to families," said study lead author Dr. Renee Boss, a neonatologist at Johns Hopkins Children's Center.

These conversations are even more poignant, given that there is no way to gauge the tiny patients' own desires.

"With older children or with adults, when decisions need to be made about life-sustaining therapies, we often reflect upon what we know about the patients, what they might have expressed earlier in life about what they might desire," Boss said. "Obviously, none of that information is available for a baby, so what we turn to are the parents' values, what is it that they would want for the baby? The parents play a much more central role in these decisions than the families of older adults."

Boss and her colleagues conducted in-depth interviews with and reviewed the medical charts of 26 mothers whose infants had died as a result of extreme prematurity or fatal congenital anomalies. Fifteen percent of the women had used assisted reproductive techniques to conceive, and 54 percent had had a previous miscarriage or infant death.

While all the parents wanted to be involved in decisions regarding delivery-room resuscitation, few could recall discussing the full range of options with doctors. And fewer still remembered being offered comfort care for their infant as an option, even when these discussions were written in the hospitals' medical charts.

Doctors and mothers also spoke in -- almost literally -- different languages, with mothers often confused by what the doctors were saying, found the study, published in the September issue of the journal Pediatrics.

While parents often predicated their life-and-death decisions on issues of religion, spirituality and hope, physicians were framing their discussions in terms of death and disability.

Moms were also more likely to regard physicians as providing hope -- not when they predicted the infant would not die, but when they expressed emotion even while reporting that the chances of survival were slim.

Much of the onus for clarifying communication lies with the physician or the system providing care, the study authors and others stated.

"I think doctors do need to be able to have attending skills or "being with" skills where they need to read the cues of the family," said Chaplain Paul Beckman of Cincinnati Children's Hospital Medical Center. "I have seen times when the doctor does not even know the sex of the baby or the name of the baby. It does take time. The doctor may have to sit with the family for half an hour instead of 10 minutes. The doctor may have to get one of his or her residents or a colleague to take his pager."

The doctor should also be in touch with the chaplain or social worker and, if possible, the chaplain or social worker should sit in on any conversations, the experts said.

A doctor may say, "There's nothing we can do for this child," and forget to add that in the short-term, parents can be given an opportunity to connect with the child.

"If it means aggressive treatment or resuscitating the baby so he or she lives a week or two, that might be very important for the parents or family to bond, so they have two weeks or two hours of memories instead of nothing," Beckman said.

These heart-wrenching decisions will affect parents for years to come.

"That setting where the doctor and the nurse and the chaplain and the social worker and the family are talking can send parents on a grief journey of healing, or it can send them on a journey of anger, resentment and guilt," Beckman said.

More information

The March of Dimes has more on neonatal death.



SOURCES: Renee Boss, M.D., assistant professor of neonatology, Johns Hopkins School of Medicine, Baltimore; Chaplain Paul Beckman, Cincinnati Children's Hospital Medical Center; September 2008, Pediatrics


'/>"/>
Copyright©2008 ScoutNews,LLC.
All rights reserved

Related medicine news :

1. Fear of Losing Key Emotion in Economic Decisions
2. Allsup's New Medicare Advisor Program Helps People with Disabilities Make Sound Healthcare Coverage Decisions
3. 2 Checklists Aid Those Over 50 With Medical Decisions
4. Telemedicine leads to better stroke treatment decisions
5. Decisions under pressure: its all in the heartbeat
6. New Study Shows Physicians Use Numerous Sources to Inform Prescribing Decisions for Patients
7. NVIC Launches Stand Up Be Counted Campaign to Protect Voluntary Vaccination Decisions in America
8. Aflac Incorporated to Present at the Sanford C. Bernstein & Co., LLC Twenty-Fourth Annual Strategic Decisions Conference 2008
9. Gerson Lehrman Group and iGuard, Inc. Partner to Offer Patients a Voice in Healthcare Industry Decisions
10. LIFE Foundation Launches Lifehappens.org to Help Consumers Make Smart Insurance-Buying Decisions
11. Study shows false memories complicate end-of-life treatment decisions
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:2/20/2017)... ... February 20, 2017 , ... ... full range of emergency dental care at his office, Antoine Dental Center. Emergency ... experience dental emergencies, they are at risk for serious complications and often experience ...
(Date:2/19/2017)... ... February 19, 2017 , ... The Citadel’s new Swain Department ... being led by Amelia Joseph, Ph.D. Joseph was engaged by the college as a ... department in early 2016. After a nation-wide search, she was selected to head the ...
(Date:2/18/2017)... ... February 17, 2017 , ... ... Devicemakers , Sponsored by Axendia, **FDAnews Free Webinar**, March 1, 2017 — ... looking to reduce their regulatory burden? Pay dividends in enhanced and predictable ...
(Date:2/18/2017)... ... February 18, 2017 , ... ProParagraph Fashion ... Film Studios ’ ProParagraph Fashion Volume 2 for all multi-line FCPX project needs. ... Users can pick and choose from hand-crafted trend-setting designs with smooth animations that ...
(Date:2/17/2017)... ... February 17, 2017 , ... Wells Pharmacy ... electronic prescribing of controlled and non-controlled substances plus the ability to manage orders ... the United States now accept electronic prescriptions, according to the Office of the ...
Breaking Medicine News(10 mins):
(Date:2/20/2017)... New York , February 20, 2017 ... regularized absorption of calcium and phosphorous minerals in one,s ... of vitamin D ingredients in maintaining a healthy composition ... medicines containing vitamin D ingredients is growing in the ... advantage of consuming vitamin D ingredients for treatment of ...
(Date:2/19/2017)... 19, 2017  nThrive™, an independent Patient-to-Payment? solutions ... thought leadership at the 2017 HIMSS Conference. The ... award from KLAS. nThrive will host ... how market trends shape the holistic, integrated revenue ... comprehensive Patient Access solution. The panel will reveal ...
(Date:2/18/2017)... PORT WASHINGTON, N.Y. , Feb. 17, 2017 ... law firm dedicated to protecting the rights of ... device problems have prompted regulators to call for ... events in 1990. Safety concerns involving ... and Drug Administration (FDA) to investigate how hospitals ...
Breaking Medicine Technology: