INTRODUCTION:

EOL care is comfort care. This care is not reserved for the dying. It is comfort and support during life threatening illnesses. Certainly most NICU patients qualify. It includes sedation, analgesia and anesthesia during times of discomfort and painful procedures. It encompasses pharmacologic therapies but non pharmacological one as well like non nutritive sucking, gentle touch, skin to skin care, music therapy and positive positioning. To many nurses this opportunity to provide care during one of the most stressful phases of a family’s life is a privilege that allows us to do what we do to provide holistic family centered care. The nurse must be fully present to the patient and families and she must recognize that this type of nursing care is an evolving process and not an event.

1. Which newborns should receive palliative care?

The categories of newborns that have experienced the transition from life-extending technologic support to palliative care are ⁽¹⁾

1.1. Newborns at the threshold of viability, with extremely low birth weights and gestational ages, especially those with gestational ages at or under 24 wks or weighing less than 500 gm if no growth retardation exists.

1.2. Newborn with complex or multiple congenital anomalies incompatible with prolonged life, where NICU care will not affect long-term outcome.

1.3. Newborns not responding to intensive care intervention, who are deteriorating despite all appropriate efforts or in combination with a life threatening acute event like, HIE, NEC, multiple end organ failure, and recipients of repeated CPRs.

2. Core principles for End of Life care of newborn and infants^(2):

2.1. Respecting the dignity of both child and caregivers

2.2. Being sensitive to and respectful of the family wishes

2.3. Using the most appropriate measures that are consistent with the family’s choices.

2.4. Encompassing alleviation of pain and other physical symptoms

2.5. Assessing and managing psychological, social, and spiritual/religious problems

2.6. Ensuring continuity of care (the child should be cared for, if so desired, by his/her primary care and specialist providers)

2.7. Providing access to any therapy that may realistically be expected to improve the child’s quality of life, including alternative or nontraditional treatments

2.8. Providing access to palliative care and hospice care

2.9. Respecting the right to refuse treatment that may prolong suffering of life.

2.10.Respecting the physician’s professional responsibility to discontinue some treatments when appropriate, with consideration for both child and family’s preferences.

2.11.Providing clinical evidenced based research on providing care at the end of life.

3. Philosophy of end of life ⁽¹⁾

· Good medical treatment

· Never overwhelmed by symptoms

· Continuity, coordination, and comprehensiveness

· Well prepared, no surprises

· Customized care, reflecting your preferences

· Consideration for patient and family resources

· Make the best of everyday

4. Professional preparation for end of life care ⁽³⁾

Scientific and clinical knowledge and skills include the following:

4.1. Learning the biologic mechanisms of dying from major illnesses and injuries

4.2. Understanding the patho-physiology of pain and other physical and emotional symptoms

4.3. Developing appropriate expertise and skill in the pharmacology of symptom management

4.4. Learning the proper application and limits of life prolonging interventions.

4.5. Understanding tools for assessing patient symptoms, status, quality of life, and prognosis

5. Rights of newborn and infant^{(4, 8)}

5.1. I have rights to listened as a person with rights and am not property of my parents, medical doctors, nurse practitioners, and society.

5.2. I have right to cry

5.3. I have right to hope

5.4. I have right to create fantasies

5.5. I have right to interact with my siblings

5.6. I have right to have my pain controlled

5.7. I have right to have my needs taken care of.

5.8. I have right to be at home and not in the hospital if my parents choose me to be here.

5.9. I have right to receive help for my brothers and sisters in dealing with my illness

5.10. I have rights to comfort care

5.11. I have right of not being alone.

6. Breaking bad news: the nurses role⁽⁵⁾ (for newborns and infants)

· Provide a “warning shot” or an introductory sentence before presenting the distress information.

· Provide an opportunity for supportive friends of family to be present when the information is shared.

· Tess the news in private setting with the physician, nurse and social worker present. Bring the family to a private room. If appropriate and desired by the parents, assist them in telling their children afterward.

· Sit down near the family, not across the table. Do not stand. Look the family members in the eye engender trust. Ask them to tell you about their child and about things that give him/her pleasure (keep consoled).

· Ask family members to explain what they understood was said. Clarify misconception. Then solicit additional questions.

· Be unhurried. Do not look at your watch.

· Be specific. The physicians or the nurse practitioners should present options, including a description of life sustaining treatments, the child’s current status, and the chance of survival, the probability of full recovery and the probability of the child’s possible disability.

· Give assurances that, if life sustaining medical interventions are discontinued, the child will continue to receive attentive care for the relief of symptoms; describe the procedure to be under taken, including the opportunities to observe important customs sand rituals and the visitation allowance

7. American Academy of Pediatrics (AAP) guidelines for end of life care^(6):

Children’s needs are often differ significantly from those of adults AAP has provided outlined recommendations for providing palliative care.

7.1. The development of widely available palliative care and respite programs to alleviate suffering and to promote the welfare of children and their families living with life threatening or terminal conditions

7.2. The implementation of a comprehensive palliative care program from the time a child is diagnosed with life threatening or terminal conditions to complement life prolonging care, as well as assist if it becomes clear that the child will not survive.

7.3. Changes in the regular of palliative care to allow broader eligibility criteria, equitable reimbursement of simultaneous life prolonging and palliative care, as well as respite care and other therapies beyond those currently mandated.

7.4. An effort by all general and subspecialty pediatricians, family physicians, pain specialists and pediatric surgeons to familiarize themselves with end of life care practices for children, including palliative medicine, communication skills, and grief counseling

7.5. An increase in support of research in to effective pediatric palliative care.

7.6. Labeling information provided by the pharmaceutical industry for symptom relief medication applicable to children.

8. Issues comparing to adult patients^(7,9)

8.1. Patient (newborns and infants) issues:

8.1.1. Patient is not legally competent.

8.1.2 Patient is in developmental process, which affects understanding of life and death, sickness and health, God and so on

8.1.3. Patient has not achieved a “ full and complete life”

8.1.4. Patient lacks verbal skills to describe needs, feelings, and so on.

8.1.5. Patient is often in a highly technical and medical environment.

8.2. Family issues:

8.2.1. Family needs to protect the child from information about his/health

8.2.2. Family needs to do everything possible to save the child

8.2.3. Family may have difficulty dealing with siblings.

8.2.4. Family experiences stress about finances

8.2.5. Family fear that care at home is not as good as at hospital

8.2.6. Grandparents feel helpless in dealing with their children and grand children.

8.2.7. Family needs relief from burden of care.

8.3. Care giver issues:

8.3.1. Caregivers need to protect children, parents and siblings.

8.3.2. Caregivers feel a sense of failure in not saving the child

8.3.3. Caregivers feel the sense of ownership” of children, even at expense of parents

8.3.4. Caregivers have out of date ideas about pain in children, especially infants.

8.3.5. Caregivers lack knowledge about children’s disease processes.

8.3.6. “Unfinished business” can influence caregiver’s style of care.

8.4. Institutional/ agency issues:

8.4.1. There is less reimbursement or none for children’s end of life care (hospice/palliative)

8.4.2. Intensity is high for staff caring for children at home.

8.4.3. Ongoing staff support is necessary.

8.4.4. Children’s services have immediate appeal to public.

8.4.5. Special competencies are needed in pediatric care.

8.4.6. Assess how ad mission criteria may screen out children

8.4.7. Address unusual bereavement needs of family members.

REFERENCE:

1. American association of college of nursing (AACN) (1999). Peaceful death: Recommended competencies and curricular guidelines for end of life nursing care: Position statement Washington DC:AACN

2. Bhungalia S, Kemp C (2002). Indian Health beliefs and practice related to the end of life. Journal of hospice and palliative nursing, 4(1), 54-58

3. Ferrrel BR, Coyle N, editors (2002) Text book of palliative nursing, New York: Oxford University Press.

4. Kuebkler KK, Berry PH, Heidrich DE (2002). End of life care: clinical Practice guidelines. Philadelphia. WB Saunders.

5. Sudia Robinson T (2003) Hospice and palliative care. Comprehensive neonatal nursing : a physiologic perspective, edition 3, St. Louis WB Saunders publishers

6. Stevens MM (1999). Care of the dying child and adolescent: family adjustment and support. Oxford University press.

7. Hinds PS, Oakes L, Furman W (2001) End of life decision making in pediatric oncology. Text book of palliative nursing, New York: Oxford University press.

8. San Jose, Costa Rica: Palliative care foundation. Care center for kid’s child rights.

9. Kenner Lott,(2004) Neonatal Nursing. Ist edition. WB Saunders, Page no 469-480

Received on 19.11.2014 Modified on 02.12.2014

Asian J. Nur. Edu. and Research 5(2): April-June 2015; Page 297-299

DOI: 10.5958/2349-2996.2015.00059.2