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Perinatal palliative care: A Perinatal palliative care: A Perinatal palliative care: A Perinatal palliative care: A

Spectrum of CaringSpectrum of CaringSpectrum of CaringSpectrum of CaringSuzanne S. Toce, MD

Neonatologist (retired), Departments of Pediatrics and Medical Humanities

Marie Walter, MS, RN

OB Clinical Nurse Specialist

Objectives

The learner shall be able to:

• Describe fetuses and newborns

appropriate for perinatal palliative care

• Identify the components of perinatal

palliative care

• Apply perinatal palliative care

principles in their local setting

The presenters have

nothing to discloseIn the past 12 months neither presenter has had a significant

financial interest or other relationship with the manufacturers or any products or providers of services that

will be discussed in this presentation.

This presentation will not include discussion of pharmaceuticals or devises that have not been approved

by the FDA. We will not be discussing off label uses of pharmaceuticals or devices.

Mortality Rates

US 2009• Infant: 6.39/1000 live

births

• Neonatal: 4.19/1000 live births

• Fetal > 20 weeks: 6.22/1000 live births + fetal deaths

Wisconsin 2010• Infant: 5.7/1000 live

births

• Neonatal: 3.8/1000

• Fetal > 20 weeks: 5.3/1000 live births + fetal deaths

About 20% of these deaths are due to congenital anomalies.

National Vital Statistics Reports 61(8) 1-46

http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_08.pdf

Wisconsin Department of Health Services, Division of Public Health, Office of Health

Informatics. Wisconsin Births and Infant Deaths, 2010 (P-45364-10). January 2012.

Settings for fetal or

neonatal death

• Emergency department

• Labor and delivery

• Postpartum settings

• Nursery

• Neonatal Intensive Care

• Home

• Hospice programs

The context is challenging

In settings associated with joy and celebration

When life and death share each other’s company

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Who is involved?

Genetic Counselors

Insurers PediatriciansPediatriciansPediatriciansPediatricians Radiologists

Pregnancy

CounselorsPerinatologists

Ethics committees

Parents

MidwivesMidwivesMidwivesMidwivesN.I.C.U.

Sonographers

ObstetriciansObstetriciansObstetriciansObstetricians

Family Doctors

Labor & DeliveryLabor & DeliveryLabor & DeliveryLabor & Delivery

WardsWardsWardsWards

Child Birth Educators

Geneticists

SiblingsGrandparents

YOU

Baby�

What makes perinatal

palliative care possible?

Accurate

prenatal

diagnosis

Understanding

perinatal grief

Modern

palliative

carePerinatal

palliative

care

Practice Changes

● Early ultrasound is becoming more standard

practice

● Advances in diagnostic

technology

- NT screening

- MaterniT testing

● Earlier and more effective

referral and assessment by specialists

Assurance and reassurance

after initial diagnosis

• Offer to repeat the

ultrasound

• Offer further diagnostic

testing

• Offer referral to another

perinatal clinic for second opinion/validation of

results

Considerations in determining

treatment decisions

● The certainty of the diagnosis

● The certainty of the prognosis

● The meaning of the diagnosis to the family

Leuthner , 2007

Uncertainty

“An uncertain prognosis“An uncertain prognosis“An uncertain prognosis“An uncertain prognosisshould serve as a signal to initiate should serve as a signal to initiate should serve as a signal to initiate should serve as a signal to initiate palliative care, rather than to avoid palliative care, rather than to avoid palliative care, rather than to avoid palliative care, rather than to avoid it, even when it is not yet it, even when it is not yet it, even when it is not yet it, even when it is not yet appropriate to begin endappropriate to begin endappropriate to begin endappropriate to begin end----ofofofof----life life life life care.”care.”care.”care.”

Davies, 2008

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Identifying the fetus/newborn

• Fetal life limiting conditions able to be diagnosed with near certainty

• Newborns who are imminently dying

• Ask yourself if you would be surprised if the newborn died in the next ~6 months

• Newborns who may be expected to die before adulthood

• 10 per 10,000 children have life limiting conditions

• Half may need palliative care

Conditions where the fetus or

newborn is appropriate for

palliative care• Progressive conditions where treatment

is exclusively palliative

• Trisomies 13, 18

• Anencephaly

• Renal agenesis/pulmonary hypoplasia

• Progressive severe inborn errors of metabolism

• Conditions involving severe, nonprogressive disability associated with health complications

• Extreme prematurity

• Severe perinatal encephalopathy

• Holoprosencephaly and other brain disorders

Conditions appropriate for

palliative care (cont.)

• Conditions for which curative treatment is possible but can fail

• Severe congenital heart disease, i.e. Hypoplastic left heart

• Congenital diaphragmatic hernia

• Conditions requiring intensive long-term treatment aimed at maintaining quality of life

• Short gut from gastroschisis, NEC etc

• Spinal muscular atrophy, other myopathiesHimelstein, NEJM 2004;350:1752

Components of perinatal

palliative care

• Relief of physical

symptoms

• Emotional, psychosocial,

and spiritual support of

parents and extended family

• Advance care planning &

decisional support

• Logistical support

A tale of three babies

David

Eden

Elise

What options should parents be

given?• After prenatal diagnosis, counseling should

be balanced and all options discussed

• Termination for fetal anomaly

• Perinatal palliative care

• (Doing nothing is not an option!)

• For newborns, all options where benefits

might outweigh burdens

• Even if health care team would recommend against trial of treatment

• Don’t give any options that are not acceptable

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Emotional, psychosocial,

and spiritual support

“As soon as I heard the diagnosis, “As soon as I heard the diagnosis, “As soon as I heard the diagnosis, “As soon as I heard the diagnosis, I started mourning.”I started mourning.”I started mourning.”I started mourning.”

Cote-Arsenault 2011

Parents experiences: Emotional,

psychosocial, and spiritual

suffering• Grieving multiple losses

• Loss of their healthy baby/ normal

• pregnancy experience

• Arrested parenting

• Loss of the “personhood” for their

• infant

• Interactions with others

• Fragmented health care

• Disconnected family and friends

• Feeling utterly aloneCote-Arsenault 2011

What do parents want?

• Information

• Shared decision making

• Honesty, empathy, presence, hope

• Emotional, psychosocial, spiritual support

• Sensitive communication with them and

among health care providers

• Listening

What do parents want? (cont.)

• Validation of the fetus/newborn

• Pain and symptom management

• Support in decision making

• Compliance with advance care preferences, written care plan

• Access, continuity and transition

www.facct.org, James and Johnson, 1997; Vickers, Carlisle, 2000, Wharton 1996, Wool & Northam 2011, Krahn 1993, Carter 2007, Henley 2008, Feudtner 2009, Keene Reder 2009, Izatt 2008

Decision making: What

should parents be told?

• Information including survival, long term

disability, anticipated clinical course

• Be honest and unbiased

• Provide ranges of outcomes

• Provide national data and your data

• Specify degree of uncertainty

• Words matterAAP Bioethics Resident Curriculum, Haward 2008, Boss 2008, Ahluwalia 2008, Janvier 2008, Kaempf 2009, Marcello 2011

• Socially stigmatized procedure

• May not be an option due to:• legalities

• insurance coverage

• finances

• Medical or surgical procedures

• Can be stressful • Some parents may feel pressured to choose this option

TOPFA: Termination of Pregnancy

for Fetal Anomaly

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• Higher levels of trauma

• Intense emotions

• Higher levels of depression and anxiety

• Long term??

Wool (2011)

Safety net for those choosing

TOPFAThe decision to continue

the pregnancy

“The primary goal in perinatal palliative care is to help families with the process of making choices about pregnancy management and after-birth care that incorporate their personal and religious beliefs, and are in the best interest of their baby.”

Sumner, Kavanaugh & Moro, 2006

“If you’d never been born, then you might be an ISN’T! An isn’t has no fun at all! No he disn’t.”

Perinatal palliative

care as an alternative

Advance care planning

““““Plans are useless, but planning is Plans are useless, but planning is Plans are useless, but planning is Plans are useless, but planning is invaluable.”invaluable.”invaluable.”invaluable.”- Winston Churchill

GoalsGoalsGoalsGoals

Decision making

Written plan of careWritten plan of careWritten plan of careWritten plan of care

Communication

Follow up/re-evaluation

Information

Advance care planning Why is advance care

planning important?

• Disease in newborns and children has an

unpredictable course and prognosis

• Builds trust

• Helps to avoid confusion and conflict

• Proactive decision making avoids reactive

decision making during crises

• Helps to avoid treatments not furthering the goals

• Empowers the family & reduces burden

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Advance care planning ≠ DNR

Advance care planning is about what you CAN do

Think positively Birth plan components

• Clear goals

• Site of delivery

• Fetal monitoring

• Mode of delivery

• Who will be in attendance

• Maternal and neonatal medications

• Specified components of resuscitation

• Site of care of the baby

• Feeding plan

• Baptism, ceremonies desired

• Special memories & mementoes

• Contingency post discharge plan

“There is no “There is no “There is no “There is no

cure for birth cure for birth cure for birth cure for birth

and death save and death save and death save and death save

to enjoy the to enjoy the to enjoy the to enjoy the

interval”interval”interval”interval”

George Santayana

1863-1952

Logistical support:

The practical stuff

• Who is going to care for the sibs during delivery?

• Where will you get discharge pain meds at 0200?

• How do you get a car bed because of airway obstruction?

• Who will help out at home?

• Who will declare death at home?

• How do you transport the baby’s body/ across state lines?

Involve and support the family

Don’t forget the siblings!

Facilitate rituals

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Community supportWhat are the current challenges

with perinatal palliative care?

• Fragmentation & discontinuity

• Poor goal recognition and

decisional support

• Ethical crises & overuse of

technology

• Inattention to physical comfort,

spiritual &psychosocial issues

• Inadequate advance care

planning & planning for uncertainty

Challenges (cont.)

• Society is death denying

• “death = failure”

• Varying levels of professionals’ skills and training

• Staff unfamiliarity with palliative care in general

• Poor recognition of appropriate fetuses/newborns

• Lack of identification of goals of the family

• Limited access to services and funding

• Few programs willing to start care prenatally

• Delayed implementation

• Unbalanced counseling

• Limited site resources

• Clinician stressors including time limitation

Wool & Northam, 2011

“There are beginnings and endings and “There are beginnings and endings and “There are beginnings and endings and “There are beginnings and endings and

there is living in between.” there is living in between.” there is living in between.” there is living in between.”

(from Lifetimes by Melonie Ingpen)

Organizational processes to optimize care

• Identify task force team members & “stakeholders”

• Identify patients – which fetuses/newborns

• Describe the current and the ideal patient flow

• Identify existing and needed community resources

• Identify barriers to optimal care

• Develop plans for communication, care coordination, documentation

• Develop and distribute parent education materials

• Disseminate new process to health care providers and provide needed education

• Verify success via parent surveys & quality improvement evaluation

.

The task force• Bereavement services

• Physicians and staff from OB, pediatrics, genetics, labor and delivery, postpartum, nursery

• Ethics

• Home care

• Pastoral care

• Social services

• Information systems

• Registration

• Ultrasound

• Quality improvement

• The organization

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The perinatal palliative care

team

• Family

• Obstetrician/perinatologist

• Social worker

• RN bereavement coordinator

• Neonatologist/pediatrician/neonatal RNs

• L & D RNs

• Chaplains, psychosocial counselors

• Others as needed

Working together

Patients, physicians,

nurses in the ambulatory setting

and the inpatient

setting, social workers, etc., all play

a part in bridging the

care during and after the delivery of the

baby.

Staff education and support

• Information about perinatal death

• Death ≠ failure

• Concepts of perinatal palliative care

• Communication tools to support families

• Conversation “scripts”

• Staff support

• This is stressful work!

• Advance in-services in challenging cases

• Debriefing after a death

How to measure good care

• Processes/ Steps to good care

• Advance care planning

• Following preferences

• Results of care

• Pain and symptom control

• Experience/satisfaction with care

• Community

• Emotional support

• Coordination/continuity

• Caregiver experiencewww.facct.org

Perinatal

palliative care

does not mean

only EOL care

Perinatal

palliative care

is

quality care

The OutcomeDavid was transferred to a NICU, enrolled in a palliative care program and discharged home at 10 days with a home visiting RN. He died 3 days later.

Elise was born still. Her parents had prayed for her to survive through birth so that the family could have time with her alive. Despite this they felt they had chosen the right path for their family and that they were well supported in their decisions.

Eden was home at 24 hours with a visiting home peds hospice RN. Every day was celebrated. She died at 10 days surrounded by her family.

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Summary

• Fetuses and newborns appropriate for perinatal palliative care can be identified allowing for early entry into care

• Components of perinatal palliative care can be applied regardless of setting of care and will improve quality of care

• Any organization with a delivery service can provide perinatal palliative care

From the British Association of Perinatal Medicine; on the ACT website:

http://www.act.org.uk/news.asp?itemid=804&itemTitle=New+resources+from+BAPM

+%2D+framework+for+clinical+practice&section=94&sectionTitle=News

Advance care planning early

in course of disease• Anticipate potential course of disease

• Anticipate potential symptoms associated with disease or treatment

• Review decision making guidelines

• Assess role of spirituality, religion, culture

• Determine appropriate goals and a treatment plan

• Explore circumstances in which goals might

change from life prolongation to primarily comfort

• Plan on regularly reviewing goals and the advance care plan

Initial Care

● Team addresses grief and support for loss of a normal pregnancy

● Present options

● Allow time for decision making

● Support provided through the end of the pregnancy, regardless of the choice made

● Continuity of care, “may alleviate medical and social isolation and give parents time to

decide how to make the most of their time with their baby.”

Sumner & Kavanaugh, 2006

For further information• AAP Committee on Fetus and Newborn. Noninitiation or

Withdrawal of Intensive Care for High-Risk Newborns Pediatrics 2007; 119: 401 - 403.

• ACT: www.ACT.org.uk > help for professionals: Care pathways > neonatal care pathway; End of life > child and family wishes when life is limited and other great resources

• Ahluwalia J, Lees C, Paris JC. Decisions for life made in the perinatal period: who decides and on which standards? Arch Dis Child Fetal Neonatal Ed 2008;93:F332-334

• Blueprint for a Perinatal Palliative Care Program® Tool Kit http://www.bereavementservices.org

• Boss RD et al. Values Parents Apply to Decision-Making Regarding Delivery Room Resuscitation for High-Risk Newborns. Pediatrics 2008;122;583-589

• British Association for Perinatal Medicine http://www.bapm.org/publications/index.php >guidelines> Palliative Care (supportive and end of life care):A Framework for Clinical Practice in Perinatal Medicine August 2010

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• Carter B. Journal of Perinatology 2007; 27, 467–468

• Carter BS, Leuthner SR. The Ethics of Withholding/ Withdrawing Nutrition in the Newborn. Seminars in Perinatology, 2003;27:480-487

• Carter BS, Levetown M, eds. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook. Johns Hopkins University Press [Second edition due out 2011]

• Chervenak FA, McCullough LB. Ethical dimensions of

non-aggressive fetal management. Seminars in Fetal & Neonatal Medicine 2008;13:316-319

• Côté-Arsenault D, Denney-Koelsch E. “My baby is a

person”: Parents’ experiences with life-threatening fetal diagnosis. J Palliat Med. 2011;14(12):1302-8.

• Feudtner C, The breadth of hopes. NEJM 2009;361:2306

• Feudtner, C. Collaborative communication in pediatric palliative care: A foundation for problem-solving and decision making. Pediatr Clin N Am 2007;54:583-607

• Gale, G, Brooks, A. A parents’ guide to palliative care. AdvNeonatal Care 2006;6:54-55

• Gillis, J. We want everything done. Arch Dis Child 2008;93:192

• Haward MF, Murphy RO, Lorenz JM. Message Framing and Perinatal Decisions. Pediatrics 2008;122;109-118

• Henley A, Schott J. The death of a baby before, during or shortly after birth: Good practice from the parents’ perspective. Seminars in Fetal & Neonatal Medicine 2008;13:325-328

• Himelstein B, et. al., Pediatric Palliative Care. NEJM 2004;350:1752-62 Excellent review!

• Kaempf JW, et al. Counseling pregnant women who may deliver extremely premature infants: Medical care guidelines, family choices, and neonatal outcomes. Pediatrics. 2009;123:1509 –1515

• Keene Reder EA, Serwint JR. Until the Last Breath: Exploring the Concept of Hope for Parents and Health Care Professionals During a Child’s Serious Illness. Arch Pediatr Adolesc Med 2009; 163:653

• Kilby MD, Pretlove, SJ, Bedford-Rusell, AR. Multidisciplinary palliative care in unborn and newborn babies. BMJ 2011;342:d1808

• Lamiani G. Analysis of enacted difficult conversations in neonatal intensive care. J Perinatol 2009; 29: 310–316

• Leuthner, S., Lamberg-Jones, E. Fetal Concerns Program: A model of perinatal palliative care. MCN 2007; 32:272-278

• Leuthner, SR . Fetal palliative care. Clin Perinatol 2004;31:649-665.

• Lamiani G. Analysis of enacted difficult conversations in

neonatal intensive care. J Perinatol 2009; 29: 310–316

• Leuthner, S., Lamberg-Jones, E. Fetal Concerns Program: A model of perinatal palliative care. MCN 2007; 32:272-278

• Leuthner, SR . Fetal palliative care. Clin Perinatol

2004;31:649-665.

• Levetown, M. and the AAP Committee of Bioethics. Communicating with children and families: From everyday interactions to skill in conveying distressing information. Pediatrics 2008;121:e1441-1460. Excellent resource.

• Mercurio MR. The Ethics of Newborn Resuscitation. Semin

Perinatol 2009;33:354-363. Well thought out discussion.

• Michelson, KN, et.al. Parental Views on Withdrawing Life-

Sustaining Therapies in Critically Ill Children Arch PediatrAdolesc Med. 2009;163(11):986-992

• Miquel-Verges F, et al. Prenatal Consultation With a Neonatologist for Congenital Anomalies: Parental Perceptions. Pediatrics 2009;124;e573-e579

• Morrison, W. Please Let Me Hear My Son Cry Once. AMA Journal of Ethics. 2010;12:530-534. Nice case review.

• Munson, D. Leuthner, S. Palliative care for the family carrying a fetus with a life-limiting diagnosis. PediatrClin North Am 2007;54:787-798

• Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues. 11/06. http://www.nuffieldbioethics.org/neonatal-medicine

• Parikh NA, et al. Evidence-Based Treatment Decisions for Extremely Preterm Newborns Pediatrics 2010;125;813-816

• Partridge JC, Dickey BJ. Decision-making in Neonatal Intensive Care: Interventions on Behalf of Preterm Infants. NeoReviews 2009;10;e270-e279

• Quill TE, Arnold RM, Platt F. “I wish things were different”: expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med 2001;135:551-5.

• Quill TE. Initiating end of life discussions with seriously ill patients: Addressing the “elephant in the room.” JAMA 2000;284:2502-7.

• Skotko BG, et.al. Down Syndrome Diagnosis Study Group. Postnatal Diagnosis of Down Syndrome: Synthesis of the Evidence on How Best to Deliver the News. Pediatrics 2009;124;e751-e758

• SSM Cardinal Glennon Children’s Hospital and Seattle Children’s tools http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3310

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• Steele R, Davies B. End-of-life care in a children's hospice

program. J Palliat Care. 2005;21:5-11

• Susan Izatt, Educational Perspectives: Difficult Conversations in the Neonatal Intensive Care Unit NeoReviews 2008;9;e321-e325

• Tyson JE, et al. Intensive Care for Extreme Prematurity: Moving

Beyond Gestational Age. N Engl J Med 2008;358:1672-1681

• Tyson JE, Stoll BJ. Evidence-based ethics and the care and

outcome of extremely premature infants. Clin Perinatol.

2003;30:363–387

• When Children Die. IOM 2002

• Wolfe J, Hinds P, Sourkes B, eds. Textbook of Interdisciplinary

Pediatric Palliative Care. 2011, Sanders.

• Wool C, Northam S.The Perinatal Palliative Care Perceptions

and Barriers Scale Instrument©: development and validation.

Adv Neonatal Care. 2011 Dec;11(6):397-403

Interactions with Others

● Fragmented healthcare

- Disjointed/ confusing appointments

- Many different specialists

● Disconnected family and friends

- Awkwardness with family and friends

- Lack of understanding

● Utterly alone

- Sense of being alone/ marginalized

- Accumulated separations

Cote-Arnesault, 2011