|Section 4. Readings
John A. Robertson : The status of impaired infants
Tristam Engelhart: Aiding the Death of Young Children
Michael L. Gross : Avoiding Anomalous
Robert Weir: Decisions in the Midst of Uncertainty
Nancy Jecker and Roberta Pagon: Medical Futility
Norman Fost, MD, MPH : Medical Futility
Decisions Regarding Treatment of Seriously Ill Newborns
Fost: Medical Futility (Commentary)
"Futility" and "Inhumanity" are vague terms and arbitrary. Such terms
involve personal value preferences. There is uncertainty concerning the
diagnosis and prognosis for neonates. The questions is whether or not LIFE
is WORTH LIVING. Medical doctors tend to medicalize a subjective value
Article written in the Journal of the American Medical Association :
Vol. 281, pp. 2041-2043, June 2, 1999
Palliative Care to the Forefront: One Nurse’s View
Anita Catlin DNSc, FNP, FAAN
Journal of Hospice and Palliative Nursing
Volume 6 Number 3
Pages 142 - 143
You may ask: “Why would I be interested in an issue with articles
on newborns and children? I only care for adults in my practice.”
The movement to include fetal loss and newborns in hospice and
palliative care is relatively new. At every step, we are learning
from our adult care colleagues. Although you may not have cared for
newborns in the past, the movement to join obstetrics, neonatology,
and hospice care is a growing field. With the advent of
technological advances for newborns, many children who in previous
years would have died at birth now are being supported and kept
alive. Many of these children have lethal anomalies or extreme low
birth weight prematurity, and despite ongoing treatment, they will
later die at home. Those of us in the perinatology field will look
to you as leaders in providing these families a supported and
dignified death for their children.
This edition of Journal of Hospice and
Palliative Nursing takes a leadership position in neonatal and
pediatric hospice and palliative care by showcasing three noteworthy
articles: Children and Adolescents Participating in Research and
Clinical Care Decisions at the End of Life, by Pamela Hinds;
Understanding Grief: A Component of Neonatal Palliative Care, by
Tricia Romesberg; and The Impact of Hippotherapy on Grieving
Children, by Hilda Glazer. With the publication of these articles,
those of us in neonatal and pediatric end-of-life care can join our
adult hospice and palliative care colleagues and share the
importance of the work we do.
I have been privileged to work in this
field for nearly 20 years, and it was within the context of my
experience that Editor-in-Chief Leslie H. Nicoll asked me to write
this guest editorial. Realizing that many readers might not be aware
of some of the key turning points in this field, I wanted to share a
few highlights from history:
* 1973: Raymond Duff and Alex Campbell
1 publish a landmark paper
in the New England Journal of Medicine questioning whether
dying newborns must be supported in the nursery and voicing that
they should be allowed to die. This study receives controversial
* 1981: Nurses Teresa Rambo and Sara Wheeler of Gunderson Lutheran
begin an organization to train nurses in supporting women who lose
babies called Resolve through Sharing (RTS). RTS continues its work
to become known nationally as the standard of care for obstetric
nurse training in providing support for families who lose a baby.
* 1982–1984: The late President Ronald Reagan, with the assistance
of Surgeon General C. Everett Koop, initiates strict regulation
(known as the “Baby Doe” laws) disallowing physician decision making
for newborn end-of-life care and requiring technological support for
* 1983: The Long Dying of Baby Andrew ,
2 describing a child who is
kept alive despite parental requests, is published and causes
reconsideration of requiring support for all newborns.
* 1986: The Baby Doe regulations are ruled unconstitutional by the
US Supreme Court on the grounds that the autonomy of the states had
been violated and that the Rehabilitation Act did not apply to the
medical care of infants who are handicapped. Despite being ruled
illegal, allowing newborns to die becomes extremely difficult.
* 1986: Kristin Swanson 3,4
publishes her first in a series of qualitative studies about
miscarriages and the needs of women with critically ill and dying
children in the neonatal intensive care unit.
* 1987: Hastings Center Journal
5 publishes a study on
support of impaired newborns.
* 1988: Joy Penticuff 6
publishes work supportive of parental decision making. Sherokee Isle
7 and Deborah Davis
8 begin authoring a series
of texts on pregnancy and newborn loss.
* 1992: William Silverman, 9,10
father of American neonatology, continues to publish nonstop in his
retirement against the excesses of neonatal resuscitation of babies
who should be receiving palliative care. Silverman becomes champion
of the palliative care for newborns movement.
* 1993: Sociologist Rene Anspach
11 studies end-of-life decision making in the neonatal intensive
* 1995: Two books, Sylvie’s Life
12 and Lost Lullaby
13 are published by mothers
writing about their fight to allow their newborns to die. The books
state that physicians controlled decision making for their dying
* 1997: American Academy of Pediatrics funds study
14 to investigate physician
decision making for end-of-life care in severely premature newborns.
* 1997: Several states and cities (Wisconsin, Denver, and
Sacramento) 15 hold public
hearings to make recommendations about intensive care technology for
newborns and palliative care.
* 1998: International parents of impaired newborn graduates from
neonatal intensive care units band together and begin the Narof
support group. Moderated by Helen Harrison, one of the themes is:
“Children should be allowed to die when extremely premature.”
* 1998: The notion of palliative care for newborns gains strength.
Physicians and nurse members of the American Society of Bioethics
and Humanities (Steven Leuthner, Brian Carter, Marcia Levetown,
Suzanne Toce, Byron Calhoun, Winnifred Pinch, Elizabeth Pector, and
Kristina Orfali) work together to plan studies and mutual support.
University Press and Johns Hopkins Press begin to sponsor journal
editions and texts written by our group.
* Lizabeth Sumner, Director of the Children’s Division of the San
Diego Hospice, teaches nationally about her work with dying
* 2000: A study is conducted on end-of-life care for newborns
removed from ventilatory support.
16 Many of the infants
received no pain or symptom management when removed from the
ventilator, and some lived up to 10 days before dying.
* 2000: Neonatologist Brian Carter and I conduct a national Delphi
study on end-of-life care needs for newborns.
15 Funded by the American
Nurses Foundation, 101 participants during an 18-month period help
develop a protocol for neonatal end-of-life care. The protocol is
published in the Journal of Perinatology and in Neonatal Network
and inserted into many of Carol Kenner’s neonatal publications.
* 2000 to present: Physicians and nurses worldwide e-mail requests
to me for the end-of-life protocol. Those of us supporting neonatal
palliative care continue to meet, talk, and write. We receive
invitations nationally and internationally to help facilities
incorporate hospice care into the neonatal area.
* 2000: The End-of-Life Nursing Education Consortium (ELNEC) project
is funded by The Robert Wood John-son Foundation. This partnership
between the American Association of Colleges of Nursing and the Los
Angeles-based City of Hope National Medical Center begins to train
nursing leaders throughout the country in both adult and pediatric
palliative care. Nurse Cynda Rushton continues as national leader
for access to hospice for children.
* 2002: The National Perinatal Association recognizes the Palliative
Care Protocol for Newborns as the Model of Care Award winner.
* 2002: Nurse Patti Lewis opens Alexandra’s House, the nation’s
first freestanding neonatal hospice, in Kansas City.
* 2003: Last Acts, a Robert Wood Johnson-sponsored national
campaign, gathers nursing leaders from the Society of Pediatric
Nurses, National Association of Neonatal Nurses, Association of
Pediatric Oncology Nurses, Institute of Medicine, and National
Leadership Academy in End of Life Care to create a joint document:
Precepts for Palliative Care for Children, Adolescents, and Their
* 2003: Sutter Alta Bates Hospital in Berkeley, CA, begins a
neonatal palliative care program.
* 2003: American Academy of Pediatrics Perinatology Subsection
Meeting chaired by Deborah Campbell hosts session on neonatal ethics
and palliative care.
* 2004: The National Institute of Health holds a two-day meeting to
discuss limits of viability and when palliative care might be
These are just highlights; there are many more influential people
and events that have occurred in the movement for palliative care
for newborns. The movement for adult access to hospice and
palliative care has set the standard. It is with pleasure and
humility that those of us in pediatrics will continue to learn from
the readers, writers, and editors of the Journal of Hospice and
Palliative Nursing .
1. Duff RS, Campbell AGM. Moral and ethical
dilemmas in special care nurseries. N Engl J Med. 1973;289:890–894.
2. Stinson R, Stinson P. The Long Dying of Baby
Andrew. Boston: Little Brown; 1983.
3. Swanson-Kauffman KM. Caring in the instance of
unexpected early pregnancy loss. Topics Clin Nurs. 1986;8(2):37–46.
4. Swanson KM. Research-based practice with women
who have had miscarriages. Image J Nurs Schol . 1999;31(4):339–345.
5. Nolan K, ed. Imperiled newborns. Hastings
Center Report. 1987;17(6):5–32.
6. Penticuff JH. Neonatal intensive care: parental
prerogatives. J Perinat Neonat Nurs. 1988;1(3):77–86.
7. Ilse S. Empty Arms: Coping with Miscarriage,
Stillbirth, and Newborn Loss . Maple Plain, MN: Wintergreen Press.
8. Davis D. Loving and Letting Go . Omaha,
NE: Centering Corporation; 1993.
9. Silverman WA. A hospice setting for humane
neonatal death. Pediatrics , 1982;69:239.
10. Silverman WA. Overtreatment of neonates? A
personal retrospective. Pediatrics, 1992;90:971–976.
11. Anspach RR. Deciding Who Lives: Fateful
Choices in the Intensive-Care Nursery . Berkeley, CA: University of
California Press; 1993.
12. Rogoff M. Silvie’s Life . Berkeley, CA:
Zenobia Press, RDR Books; 1995.
13. Alecson DG. Lost Lullaby . Berkeley, CA:
University of California Press; 1995.
14. Catlin AJ. Physicians neonatal resuscitation of
extremely low birth weight preterm infants. Image J Nurs Schol.
15. Catlin AJ, Carter BS. Creation of a neonatal
end of life palliative care protocol. J Perinatol.
16. Abe N, Catlin AJ, Mihara D. End of life in the
NICU: a study of ventilator withdrawal. MCN Am J Maternal Child Care.
17. Kenner C, Lott JW. Neonatal Nursing Handbook
. Philadelphia: WB Saunders; 2003.