ADMINISTRATIVE POLICY & PROCEDURE (APP) INSTITUTIONAL POLICY AND PROCEDURE (IPP)

INTERDEPARTMENTAL INTERNAL
Division: Department: Multidisciplinary Section:
TITLE/DESCRIPTION POLICY NUMBER
End of Life Care MED-05-005(5)
INITIATED DATE EFFECTIVE DATE REVIEW DATE
th th
25 April 2007 26 Jan. 2020 26th Dec. 2022
REPLACES NUMBER NO. OF PAGES
MED-CHC-NICU-06-051 (3), MED-05-005(4) 7
APPROVED BY APPLIES TO
Chief of Medical Staff All Healthcare Providers

PURPOSE
To provide a reference for IMC staff members to ensure that best practices are followed, that enhance supportive care for
patients who are at or near the end of life, ., and family centered compassionate care that are consistent with local laws,
regulations, cultural and religious values
DEFINITION
End of Life- is that time when death, whether due to illness (acute or chronic), injury, or age, is expected within weeks
to months and can no longer be delayed or prevented by medical intervention.
Imminently Dying Patient- is the patient in the active process of or associated with the process of ceasing to be or
passing from life. Drawing to an end or declining.
Interdisciplinary meetings- are deliberate, regular meetings at which health professionals with expertise in a range of
different specialties discuss the options for patient’s treatment and care prospectively. Prospective treatment and
care planning involves making recommendations in real time, with an initial focus on the patient’s primary
treatment.
Palliative Care Interdisciplinary (PICT) meetings- Facilitate a holistic approach to the treatment and care of the
patient.
Supportive care: is care that is thoughtful, respectful, compassionate, humane, and integrated, and is provided according
to a treatment plan based on and responsive to the patient’s wishes.
Neonatal Palliative Care – is define as the planning and provision of supportive care during life and end of life care for
the baby and his or her family when managing an appropriate life limiting condition.
Do Not Resuscitate (DNR) – DNR Status means that respiratory or cardiac arrest occurs, no aggressive intervention
will be undertaken by artificial means.
Establish Eligibility – Palliative care can be considered for neonate with conditions that are not with long term survival
or carry a significant risk of death or impairing quality of life, or that cause unbearable suffering.
Antenatal Planning – Antenatal diagnosis should involve neonatologist. Discussion with OB –Gyne and other
specialists may be required to agree on diagnosis and prognosis of a condition.
RESPONSIBILITY
All IMC staff that, as per job description, are in direct contact with patients at the end of their lives.
CROSS REFERENCES
Brain Death
Organ Donation
Do Not Resuscitate Status (DNR)
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Apnea Testing
Patient & Family Education
Management of Pain
POLICY
1. All IMC staff shall adopt practices that enhance supportive care for patients who are at or near the end of life,
and their families, and are consistent with local laws, regulations, cultural and religious values
2. The healthcare provided neither hastens nor postpones death but end of life care is recognized as an integral part
of the continuum of care.
3. Respectful and responsive care shall be provided to the dying patient. The patient's comfort and dignity at the
end of life shall be provided for by:
3.1 Providing appropriate treatment for any primary and secondary symptoms, according to the wishes of the
patient or the surrogate decision maker;
3.2 Managing pain aggressively and effectively
3.3 Providing treatment of symptoms according to assessment and re-assessment of patient condition.
3.4 Sensitively addressing issues such as autopsy and organ donation;
3.5 Respecting the patient's values, religion and philosophy;
3.6 Involving the patient and, where appropriate, the family in every aspect of care; and
3.7 Responding to the psychological, social, emotional, spiritual and cultural concerns of the patient and the
family.
4. The IMC demonstrates respect for the following patient needs:
4.1 Confidentiality
4.2 Privacy
4.3 Security
4.4 Resolution of complaints
4.5 Shall any conflict arise, an interdisciplinary team meeting must be called by the primary physician and
will include all the concerned staff such as nursing, patient affairs, social worker, psychologist and
spiritual support.
4.6 Pastoral counseling {No pastoral services are available in Saudi Arabia for other religions the embassy
should be contacted}
4.7 Communication
PROCEDURE
1. ADULT:
1.1 Provide patients/families one or two points of contact for information/communication within IMC.
1.2 Recognizing special needs, such as facilitating:
1.2.1 A designated family member/watcher to stay with the patient; ample space and time for the family
(including children) to be with their beloved family member (this may include adapted visiting hours).
1.2.2 Food and comfort measures to be brought in by the family.
1.2.3 Provide spiritual advisors if available.
1.2.4 Support for end-of-life concerns, hopes, fears and expectations in an open, honest, and culturally
sensitive manner.
1.3 Patients and families (to the extent desired by the patient) will be given sufficient information needed to
participate in decisions about care.
1.4 Continue to provide palliative care for the disease related symptoms and provide comfort in a sensitive way
to help the patient prepare for death.
1.5 Elicit a complete medical history.

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1.6 Examine for signs of physical symptoms.
1.7 Assess and reassess primary symptoms related to the disease
1.8 Assess and reassess secondary symptoms related to the provided treatment.
1.9 Prescribe appropriate medication to alleviate the patient’s pain, keeping the pain at a level acceptable to the
patient and family members.
1.10 Consider referral to the palliative Care Team for patients with uncontrolled symptoms
1.11 Care of the Imminently Dying patient
1.11.1 Notify the family about the condition and if death occurs
1.11.2 Involve the interdisciplinary team and family members, as appropriate, to develop a plan of care.
1.11.3 Assess and reassess family risk factors, e.g. coping mechanisms and grief reactions.
1.11.4 Consider the use of morphine sulfate, oxygen, anxiolytics, or anticholinergics to relieve respiratory
distress of patient.
1.11.5 Consider discontinuing any inappropriate interventions such as blood tests (including blood sugar
monitoring), antibiotics and IVs.
1.11.6 Assess and reassess primary symptoms related to the disease and secondary symptoms related to
treatment, e.g. nausea and respiratory distress, use Daily Nursing Assessment and Intervention Flow
Sheet.
1.11.7 Reconsider the need for nursing interventions such as discontinuing daily weight, regular vital signs
monitoring, pulse Oximeter, cardiac monitoring including for patients who are receiving intravenous
infusions of controlled medications or narcotics.
1.12 End of Life Protocol Guideline:
1.12.1 Vitals once per shift.
1.12.2 No blood work unless indicated
1.12.3 No pulse oximeter unless indicated.
1.12.4 Oxygen by nasal cannula only for comfort if needed.
1.12.5 Mouth care Q8H.
1.12.6 No daily weight
1.12.7 Social worker referral for open visiting hours
1.12.8 Spiritual advisor referral.
1.12.9 Single room if available
1.12.10 Allow many sitters
1.12.11 Consider stopping unnecessary oral medications
1.12.12 Insulin sliding scale once or twice instead of Q6H
1.12.13 Stop DVT heparin prophylaxis unless indicated.
1.12.14 Consider PRN medications for distressing symptoms (e.g. Morphine for pain and dyspnea, Haloperidol
for agitation, Glycopyrrolate for death rattle, artificial tears etc.
1.13 Spiritual care:
1.13.1 Patients/families who so desire may arrange for their spiritual representative to visit the patient and
offer prayers. The social workers can facilitate such visits upon request.
1.13.2 People of other faiths may contact their consulate to arrange for special spiritual care.
1.14 For those patients who are facing end of life issues, an emphasis on therapeutic communication will be in
place to allow for identification of end of life issues as they relate to belief and value systems, psychosocial,
emotional and spiritual issues. Identification of these issues will be made with the assistance of the Social
Services and Religious Affairs Department.
1.15 In the event of a sudden or unexpected death, the treating physician and/or nurse will contact the social
worker on duty or other appropriate personnel such as the religious affairs staff to assess the family’s needs
and provide the necessary support.
1.16 The social service and religious affairs dept. will be notified by the charge nurse via the computer system

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 format or the patient chart of those patients for whom a diagnosis of terminal illness, either short term or long
term has been identified and documented as a definitive primary or secondary diagnosis. Direction will be
taken from the Social Service & Religious Affairs Dept. members as to the management and therapeutic
communications with the patient/family end of life issues as they relate to belief and value systems, cultural,
spiritual, emotional and psychosocial issues that will be documented on the Multidisciplinary Patient &
Family Education Documentation Record.
1.17 Staff members who care for gravely ill patients and with those at the end of life encounter many challenges,
e.g. the unpredictability of death, the repeated losses, and interaction with grieving and overwhelmed family
members. They are encouraged to seek counseling services for themselves, as necessary, from Social
Services & Religious Affairs.
1.18 Social Worker will do a brief survey and calling family members of patients who died at the hospital to
find out how we can improve the care we provided to patients and families who are in similar end of life care
situation.
2. NEONATE
2.1 Family care throughout palliative care planning and delivery:
2.1.1 Staff need to consider the psychological support to the family including the siblings and should be
offered the opportunity to see bereavement counselor, social worker, and religious affairs and ethics
department.
2.1.2 Neonatologist, Pediatric Specialist, NICU Staff nurse, social worker, religious affair is part of the
supporting team.
2.1.3 Care should reflect parents personal/and or spiritual wishes. Staff should ask parents sensitively what
they would like and, where appropriate help to organize
2.2 Communicate and documentation throughout palliative care planning period.
2.2.1 Decision making and planning: It is essential that there should be multidisciplinary discussion and
decision making involving the parents and a core team which include the neonatologist, obstetrician,
pediatric specialist, social worker, religious affair, NICU head nurse or charge nurse and primary
nurse of the baby.
2.2.2 Written care plans should be in plain English or appropriate translation and all medical terminology
should be explained clearly so that parents will understand them.
2.2.3 Parents should receive all information documented. The care plan may need to be altered to allow for
changes in the place of care, the condition of the mother or the baby and the parents views and wishes.
2.2.4 The phrase “Withdrawal of Care” should be avoided and “Palliative or Comfort Care” should be offered.
An interpreter should be available if required as it is essential that the parents have a full
understanding of what is being discussed.
2.2.5 Planning care of baby while alive with parents. The care of the baby needs to be planned including
approach to resuscitation, nutrition, pain relief and comfort care. This should be discussed with
parents and what support the family will need.
2.3 Flexible parallel care planning:
2.3.1 While there are many conditions where there is reasonable certainty of death during fetal and neonatal
life, there are babies who survive longer than expected during supportive and end-of-life care. It is
vital that all care planning is continuously reviewed in the best interests of the baby.
2.3.2 There should be parallel planning for transition periods into & out of active, supportive & end-of-life
care.
2.4 Pre- Birth Care:
2.4.1 Routine antenatal care should be provided once a palliative care plan is developed with a family. The
emotional needs of the family must be taken in to account at this difficult time.
2.4.2 An explicit care plan should be developed in conjunction with the mother, which should include the
question of fetal monitoring, the action to be taken in the event of fetal distress, the conduct of

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 delivery, and how the baby will be handled and cared for and after the birth.
2.4.3 Discuss, specify and forewarn staff who should or should be present at the delivery (pediatrician, family
members, and religious affairs).
2.4.4 Non resuscitation or limitation to resuscitation should be discussed and regularly reviewed.
2.4.5 Post- natal care of the baby and mother: The suitability of the care plan should be confirmed after birth
by pediatric specialist or neonatologist. It is important that women receive normal post-natal care and
emotional support from the staff.
2.5 Transition of care from Active to Palliative Care:
2.5.1 In some case there is likely to be gradual transition from active care into palliative care. Active treatment
and monitoring may be continued during this period while parent and staff re- evaluate what serves
the best interest of the baby. There may need to be consideration of the length of time of the transition
phase so that baby’s interest is maintained.
2.5.2 Supportive Care: Continue to practice basic care to minimize distress, positioning, skin care, mouth care,
human contact including breastfeeding and skin to skin contact (Kangaroo Care). Developmental
needs of the baby should not be forgotten.
2.5.3 Pain, distress and agitation: Assess and treat any underlying causes of pain. Consider paracetamol if not
sufficient use morphine or fentanyl by the route best tolerated by the baby.
2.5.4 Nutrition: The goal of feeding is to provide comfort and reduce distress from hunger, with growth as
secondary outcome. The route of feeding is should be what is most suitable for the baby.
Breastfeeding may be comforting for the baby and mother.
2.5.5 Vomiting: Consider reducing feeds to the level the baby will tolerate and anti reflux treatment if reflux
symptomatic.
2.5.6 Constipation: Opiates may cause constipation. If causing distress consider glycerin suppositories.
2.5.7 Urinary Retention: May be caused by opiates. Consider abdominal pressure and rarely Catheterization.
2.5.8 Resuscitation Plans: Limitations to resuscitation should be discussed and reviewed regularly. Comfort
and dignity of the baby should be maintained. Consider the potential suffering and loss of dignity for
a baby that prolonged resuscitation or ventilation can lead to.
2.6 End of life-care planning:
2.6.1 Transition to end of life: It is important to explain to the family the details of care e.g. how and when an
ETtube and intravenous cannula are removed and monitoring leads disconnected.
2.6.2 Physical changes in appearance: Physical changes that are likely to occur as a baby dies should be
discussed and whether families want to see or hold their baby while he/she dies and/or after death.
Terminal gasping should be explained in order to reassure parents that this is not an indication of
suffering and usually not treated. Parents should be made aware that the time until death can vary
from minutes to hours and possibly days.
2.6.3 Post- mortem: Discussion about post mortem examination can begin prior to the baby’s death if felt
appropriate and consent may be sought at this stage. In Neonatal ICU post mortem care must be done
by a Muslim (if possible) be cleaned respectfully, clean with water and wrapped in sheets of clean
Kafan. The shroud is tied at the neck and feet turning the deceased towards Mecca.
2.7 Post End of Life Care:
2.7.1 Paper work should be completed. Ensure baby’s correct registered name appears on all
documentation.
2.7.2 Inform families about the birth and death.
2.7.3 Inform the social worker and religious affairs
2.7.4 Certification and registering of death
2.7.5 Staff should be provided with formal and informal support during the period of providing palliative care
afterwards.

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FORMS & ATTACHMENTS
Notification of Death (IMC MR 237)
HIGH RISK MONITORING TOOL

Surveys Report/Checklist/Data Collection

Rounds/Tracers N/A
Indicators
SPECIFICATION:
EQUIPMENT
N/A
REFERENCES
1. Saudi Aramco Medical Services Organization (SAMSO)
2. Departmental policies and proceedures, ministry of National Guard –Health Affairs END OF LIFE CARE
POLICY
3. Palliative care of newborn and infants. National association of Neonatal nurse Practitioner. Et al Advance
Neonatal care 2010.
4. NICU staff perceptions of bereavement/end of life care of families of critically ill and or dying infants. Engler
Am J Critical Care 2004.

APPROVAL:

Name/Title Signature Date

Revised by Evelyn Fadullon
26th Jan. 2020
NICU Head Nurse

Reviewed by Mr. Jehrel P. Gumban

26th Jan. 2020
Senior Quality Specialist, QIPS

Dr. Rafat Mosalli.

Approved by 26th Jan. 2020
Section Head NICU

Dr. May Abu Ateeq

Approved by 26th Jan. 2020
CHC, Chairperson

Ms. Dina Galai,

Approved by 27th Jan. 2020
Manager, Social Service

Dr. Amira Nabet,

Approved by 27th Jan. 2020
Inpatient Director

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 Name/Title Signature Date
Dr. Rawabi Al Shaikh,
Approved by 27th Jan. 2020
Palliative Care Consultant

Ms. Nada Massoudi

Approved by 27th Jan. 2020
Director,

Dr. Mohammad A. Albar,

Approved by 28th Jan. 2020
Director Medical Ethics Center

Mr. Samer T. Abu Ghazaleh,

Approved by 28th Jan. 2020
Chief Experience Officer

Dr. Emad Sagr,

Approved by 28th Jan. 2020
Chief Medical Officer

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