PALLIATIVE CARE IN OBGY

SETTINGS
DR PRADEEP KULKARNI
CONSULTANT IN PALLIATIVE
MEDICINE
 HISTORY
• CECILY SAUNDERS

• JOHN BONICA

• PALLIARE

• PALLIATIVE CARE
PALLIATIVE CARE DEFINITION
Palliative care is an approach, that improves the
quality of life of patients and their families, facing
the problems associated with life-limiting illness.

This is achieved through the prevention and relief of

suffering by means of early identification,
impeccable assessment and treatment of pain and
other problems, physical, psychosocial and spiritual.

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..
Disease Trajectory- When?

JPG

Palliative Care: Expanding Role and New Approaches  :Academic Internal Medicine Insight | 2010 | 8:3, 609

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 PALLIATIVE CARE –
WHEN TO CONSULT
Disease
Early advancement Decompensation Decline and
last days
Experiencing life Death and
limiting illness Dependency and bereavement
symptoms increase

Transitions Transitions Transitions Transitions Transitions

Time of
Diagnosis

Time
McGregor and Porterfield 2009

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CONCEPT
 MYTHS
• Only for cancer

• End of life

• Hastens death

• Only pain management

• Low tech high touch

CURATIVE MEDICINE PALLIATIVE MEDICINE
• To cure • To care
• Physician decides • Personalised
• Concentrates on • Concentrates on
disease illness
• Primary pc provider • Specialist pc provider
• Death as failure • As natural process
• Doctor lead • Team approach
STRIKING THE RIGHT BALANCE

Continue with Consider

aggressive prognosis;
curative accept
treatment natural
progression
 INDIAN ACTIVITIES
• IAPC 1993
• Various courses
• MD Palliative Medicine
• IJPC and other International Journals
• All Regional Cancer Centres
 PALLIATIVE CARE SKILLS
• HOLISTIC APPROACH
• SYMPTOM RELIEF
• HONEST COMMUNICATION
• SHARED DECISION MAKING
• ADVANCE PLANNING
 SIMILARITIES
• “BIRTH AND DEATH ARE THE TWO NOBLEST EXPRESSIONS
OF BRAVERY.” KHALEEL JIBRAN

• BOTH HAVE CHANGED PLACE OF HAPPENING FROM HOME

TO HOSPITAL

• CONTINUM OF TRUST OVER MONTHS

• NOBODY KNOWS, HOW THINGS TRANSPIRE

• OPEN AND HONEST COMMUNICATION

• TRUSTED RELATION- UNPREDICTABILITY

 The Role of the Physician in
Pregnancy and End-of-life Care
•Be readily available
● Provide effective and timely pain relief
● Address relational and spiritual suffering
● Address emotional suffering (fear, realization that there is no turning back,
exhaustion, helplessness)
● Provide accurate and relevant information about the process to patient and
family members
● Respect cultural and religious customs and rituals surrounding the event
● Recognize the situations requiring action and those requiring patience
● Accept and encourage the presence of loved ones at the bedside
● Recognize that birthing and dying are unique to each individual and family;
avoid a “cookbook” approach
● Understand that trust in the caregivers is important in achieving a desirable
outcome
● Recognize that effective management enhances positive memories for the
patient, family, and caregivers
 PALLIATIVE SKILLS FOR OBGY
• During ANC
• Honest communication
• Counselling
• Relief of symptoms
• Caring for cases of malignancies
• End of life care, including terminally ill
mother
 DEFINITION OF PERINATAL
PALLIATIVE CARE

Palliative care for the foetus, neonate with life

limiting conditions is an active and total approach
to care, from the point of diagnosis or recognition,
throughout the child’s life, death and beyond. It
embraces physical, emotional, social and spiritual
elements and focuses on the enhancement of
quality of life for the neonate and support for the
family. It includes the management of distressing
symptoms and care through death and
bereavement (Together for Short Lives, 2017)
WHICH PATIENTS ARE ELIGIBLE

1. Prenatally diagnosed foetal anomalies or

life-limiting conditions.
2. Pre-viable preterm foetus where birth is
imminent.
3. New-born with postnatal diagnosed life-
limiting condition
 DIAGNOSING A LIFE LIMITING
ILLNESS IN FOETUS
• Diagnosis can be ambiguous
• Protecting and parenting
• Full measure of life of baby
• Actively embracing shining moment of
brief life
• Continuation causes less grief
 DIFFICULTIES
• Every positive pregnancy test, would….
• Society also should do something…..
• No guiding care pathways for family
• Hoping for best, planning for worst
• Deteriorate fast, time is less
• Many persons involved
• Family’s grief can be lonely
• Death as failure
 COMPONENTS OF PERINATAL
PALLIATIVE CARE
• Diagnosis of life limiting foetal condition
• Team of doctors- maternal–foetal medicine
specialists, geneticists, or paediatric subspecialists.
• Communication with mother, family members
• Shared decision making- involve family, ethical
• Birth plan- dynamic
• Spiritual and emotional support after delivery
• New-born palliative care- may be hospice
• Bereavement care
https://
www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committe
e-on-Ethics/Perinatal-Palliative-Care
 STAGES OF PERINATAL CARE PATHWAY

1. Entry into a palliative care pathway.

2. Living with the condition.
3. End-of-life and bereavement care
 ANTENATAL
• Diagnosis
• BBN
• Written information
• Choices to mother and family
• Team introduction
 INTRANATAL
• Place
• Team
• Decision of delivery
• Foetal monitoring
 NEONATAL CARE
• Avoid resuscitation
• Encourage family members to participate
• Caring at it’s best
• Suckling if possible
 POSTNATAL CARE
• Routine
• PM reports if any for closure
• Reassurance by the team
• Follow up
• More support in next pregnancy
• Staff debriefing
 TERMINALLY ILL MOTHER
• Caesarean- only if viable
• Continuation of life support
• Discontinuation of life support
• Viability of foetus
• Wish of mother/ family
• No delivery if foetal viability is doubtful
 BREAKING BAD NEWS
• Missed abortion, anomaly

• Intra uterine death

• Convincing for caesarean

• Diagnosing and following malignancy

TREATING A CASE OF MALIGNANCY

• Relief of symptoms
• Improves quality of life
• Setting goals of care
• Clarify treatment plans
• Shared decision making
• Care at end of life
 SYMPTOMS
• Pain management
• Dyspnoea
• Pleural tapping
• Haemorrhage- fluids, packing, blood, radiation
• Nausea and vomiting
• Anorexia
• Malignant ascites
• Malignant bowel obstruction
• Delirium
• Bone, brain metastases
• Terminal phase
CONCEPT OF ‘TOTAL PAIN’

Emotional
Physical Anger
Symptom Disfigurement
Treatment effects Fear of death
Fatigue Feeling of helplessness
insomnia
Total
pain
Social Spiritual
Family worries Why me?
Loss of income Meaning?
Loss of social role Punishment?
isolation Purpose in life?

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 GENERAL PRINCIPLES
• Settings, develop rapport, eye contact, open
ended questions

• What patient says is pain

• Tools ideal and individualized

• Family involvement may be necessary

• Different pains separately

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WHO ANALGESIC LADDER
 OPIOIDS
Infrequent dosing
Toxicity

Analgesia

Pain
Effect

Time
 Opioids
Adequate dosing
Toxicity

Analgesia

Pain
Effect

Time
 PERINATAL HOSPICE
• Perinatal palliative care aims to enhance the
quality of life of babies with a life-limiting
condition and their families.
• Perinatal palliative care can support those
families who are notified prenatally that the
foetus being carried has a potentially lethal
anomaly
• Category 1. An antenatal or postnatal diagnosis of a condition which is not compatible
• with long term survival, e.g. bilateral renal agenesis or anencephaly.
• Category 2. An antenatal or postnatal diagnosis of a condition which carries a high risk
• of significant morbidity or death, e.g. severe bilateral hydronephrosis and impaired renal
• function.
• Category 3. Babies born at the margins of viability, where intensive care has been
• deemed inappropriate.
• Category 4. Postnatal clinical conditions with a high risk of severe impairment of quality
• of life and when the baby is receiving life support or may at some point require life
• support, e.g. severe hypoxic ischemic encephalopathy.
• Category 5. Postnatal conditions which result in the baby experiencing “unbearable
• suffering” in the course of their illness or treatment, e.g. severe necrotizing enterocolitis,
• where palliative care is in the baby’s best interests.
• Perinatal palliative care provides holistic
multidisciplinary support for families facing
the death or potential death of their newborn
infant. It is an active or total approach to care,
from the point of diagnosis or recognition
through to the infant’s death and beyond
(Thames Valley Framework, 2017).
• FFA/LLC include: but are not limited to
•  Bilateral Renal agenesis
•  Severe skeletal dysplasia
•  Anencephaly/acrania
•  Thanatophoric dwarfism
•  Trisomy 13 or 18
•  Triploidy
• PLLC include but are not limited to:
•  Severe multicystic dysplastic kidneys and
oligohydramnios
•  Severe hydrocephalus
•  Life-limiting complex cardiac defects as
agreed with the paediatric cardiology team
•  Holoprosencephaly
•  Hydrops fetalis
• Congenital anomalies
• Chromosomal anomalies
• Antenatal- maternal diseases- anaemia, PIH,
low socioeconomic status
• Intranatal- preterm births, low birth weight
asphyxias, infections
• the World Health Organization defines a stillbirth as death
of a fetus of birth weight <1000 g, gestational age <28
completed weeks (if weight unknown) or crown-heel
length <35 cm (if both criteria unknown) 
• PMR in India is 28/1000 live births- 5/1000 still birth,
23/1000 early neonatal

https://data.worldbank.org/indicator/SH.DYN.NMRT?locations=IN

https://indianpediatrics.net/mar2016/mar-242-243.htm
Stage one: Entry to the Perinatal Loss Service

• Communication
• Discussion about diagnosis and prognosis
• Care planning
• Maternal and Baby
Stage two: Living with the condition
 Stage three: End-of-life and bereavement
care

• A written plan to guide end-of-life care.

• Discuss with family and support staff:
oPlace of care
oPracticalities of care e.g. feeding, respiratory support, monitoring
oSigns of discomfort/distress
oPlans to alleviate distress (including medication)
oWhat to expect at the time of death
oThe practicalities of care after death, legal requirements, care of the
body, funeral arrangements.
Staff involved with end-of-life care should be constant and supported
 KEY COMPONENTS OF PALLIATIVE
CARE PLANNING
• Place of birth
• Advance care planning
• Parallel planning
• Training and support of staff and
multidisciplinary teams
 PERINATAL PALLIATIVE CARE
• HONEST COMMUNICATION- ALL OPTIONS,
ALWAYS AVILABLE
• SHARED DECISION MAKING- HOPES,
PRIORTIES
• DEVELOPMENT OF TRUST
• CONTINUITY OF CARE
• ADVANCED ANC/PC PLAN
• SUPPORT GROUP, NOT ALONE
• DEBRIFING FOR TEAM
• HOME CARE/CHILDREN’S HOSPICE
 GUIDING PRINCIPLES OF
PERINATAL PALLIATIVE CARE
• To provide timely support tailored to the needs of families
• To provide multidisciplinary support for Parents’ choices and values
• To facilitate delivery close to the family’s home
• To provide specialist input and advice to support local hospitals to
provide PPC to families delivering in their local hospital
• To provide training and support for staff locally and in regional units
providing PPC
o to enable confidence to care for the Mother in the antenatal period,
o to care for the baby at birth,
o to engage in parallel planning,
o to assist in transitioning to the neonatal unit and/or home
o to deliver a responsive end-of-life care plan.
 FAQs
• What is perinatal hospice?
• Where can parents find perinatal hospice and palliative care support?
• What if there isn't a program nearby?
• Doesn't hospice mean giving up and losing hope?
• Which conditions are appropriate for perinatal hospice?
• What if the doctor says my baby is incompatible with life?
• What if the diagnosis is wrong?
• Why would anyone continue a pregnancy like this?
• Isn't continuing the pregnancy harmful to the mother's mental health?
• What about the mother's physical health?
• Won't the baby suffer?
• What happens after the baby is born?
• Can a baby's organs be donated?
• How late can a pregnancy be terminated?
• What are the termination options?
• Isn't perinatal hospice mostly for people who oppose abortion?
• Does perinatal hospice & palliative care include pregnancy termination?
• Is perinatal hospice expensive?
• How many people actually do this?