The Children’s Hospital
HUGS - Palliative Care and Transitions Care Program
Process Standard
Scope of Services
HUGS is the Children’s Hospital Palliative Care, Pain and Symptom Management and Transitions Care
Program, it provides care across the continuum while providing assistance with the management of
the physical, psychological, emotional, and spiritual needs of infants and children and their families
when conditions which are chronic, debilitating and/or life limiting exist.
Mission
To promote and enhance the quality of life for infants and children no matter how short their life.
Purpose
The purpose of the program is multifaceted:
• To provide guidance to families of infants or children with life limiting and or threatening
conditions.
• To educate the patient and family to promote understanding of the underlying disease process.
• To establish an environment, which fosters trust of the healthcare team.
• To make recommendations and assist families in making life choice decisions.
• To provide symptom control and pain management.
• To coordinate multidisciplinary services.
Program Goal
• To provide help, understanding and guidance for patients and families in dealing with treatment
options, care decisions and end of life decisions.
• To promote the highest quality of life for the patient and family.
• To improve the quality of the child’s remaining life and help death be a gentle and peaceful
process.
HUGS Team
The Children’s Hospital Palliative Care Team is a multidisciplinary team consisting of members from
the following disciplines: Physicians and RNs from Neonatal ICU and PICU, RN from Perinatal Care,
Pain Management Nurse, NPs from CH areas, CORM-Social Workers and Discharge Planning, Child Life,
Transitions Counselors, Adult Palliative Care, Chaplin Services, Hospice and Home Health. There will
be a nursing team leader from Neonatal Services and Pediatric Critical Care Services. A physician will
be appointed program Medical Director.
Team responsibilities include:
• Coordination of education and training of staff on the HUGS program and process.
• Provide physical, psychological, emotional, and spiritual support to the patient and family.
• Facilitate care planning with family to meet multidimensional care needs.
• Promote multidisciplinary care rounds
• Assist patients and families in establishing goals of care and priorities.
• Monitoring of outcomes to include patient volume, length of stay, pain comfort, provider, and
family satisfaction.
• The team will meet monthly to review cases and issues.
Making a Transitions Referral
The Children’s Hospital Transitions Counselors are available to support families and children in making
life choice decisions. They act as the voice for the child and family who are facing a medical crisis. A
Transitions referral may be made by any healthcare provider, family, or friend if an infant or child has
recently experienced a loss or when conditions which are chronic, debilitating and/or life limiting
exist. Transitions counselors provide information to educate children and families when they have to
consider life-sustaining treatments and assist children and their families in establishing goals of care.
The counselors are available to assist with the following:
 Help arrange and facilitate care conferences with physicians
 Communication between family members
 Provide emotional support through counseling
 Education about your illness, what to expect during therapy or if the disease progresses, and
how to cope with limitations
 Clarify the child's wishes and goal/s of care
 Provide education on code and resuscitation status
 Provide resources for grief and bereavement support
 Expressing family concerns to healthcare providers
Making a HUGS Referral/Consult
Definitions
Referral to HUGS Team: The care of the patient will be transferred to the HUGS team for
management. The attending physician shall write an order for a HUGS referral. Example: Referral to
HUGS team for end of life care.
Consult HUGS Team: The attending physician may consult the HUGS team for a specific purpose but
remain the attending physician. An order should be written to consult the HUGS team stating the
reason for the consult. Examples of reasons include: pain management, symptom management,
transitions, pastoral support, etc. The consult will allow the physician access to a specific portion of
the team.
Process:
1. Clinical staff with concerns for uncontrolled pain or symptom management for chronic or
terminal diseases should contact the attending physician, unit nursing leadership and
designated HUGS team member.
2. Referrals or consults for patients with uncontrolled pain or in need of symptom management
for chronic or terminal diseases should be made by the primary physician. An order for a HUGS
consult or referral should be written including the specific reason for the consult or referral.
3. When an order is written for a HUGS referral or consult the medical receptionist on the unit
will contact the social worker who will have the responsibility for making the appropriate
contacts.
Criteria for HUGS Referral/Consult
• Uncontrolled pain and or symptom management for chronic or terminal diseases
• Assistance with developing patient care goals with patient and family.
• Assistance in helping families with end of life decision making, changes in resuscitation status and
withdrawal of life support.
• Complex illness is causing fragmentation of care and poor communication/Acute family
conflict/Fragmented family
• Terminal illness
• Patient experiences sudden unanticipated death (infant, child or parent) while in hospital
• Extreme lifestyle changes (amputations, spinal cord injury, etc.)
• Chronic medical condition with development of new complications or progression to terminal
phase of illness.
• Hospital length of stay > 60 days in NNICU/Level II or > 30 days in PICU, C4N, C3M.
• Loss of a parent, sibling or primary caregiver.
Responsibilities of the HUGS team after initial consultation:
1. HUGS team member will facilitate multidisciplinary team discussion to identify patient and
family needs and establish goals of care.
2. Providing support to the patient, family and or staff.
3. Initiation of Patient Care Order Sets (e.g., provide pain management and symptom control).
4. Refer to Hospice program for follow-up and participation in family bereavement program.
5. Follow up with primary physician.
References
• Carter, Brian & Levetown, M. Palliative Care for Infants, Children and Adolescents-A Practical
Handbook. The Johns Hopkins University Press. 2004
• End of Life Nursing Education Consortium. Pediatric Palliative Care. City of Hope and AACN. 2010.
• Ferrell, B., Colye, N., Oxford Textbook of Palliative Care. Oxford University Press. 2010.
• Ferrell, B., Colye, N., The Nature of Suffering and the Goals of Nursing. Oxford University Press.
2008.
• Friendrichsdorf, S., Remke, S., Symalla, B., Gibbon, C., Charastek, J. Developing a Pain and
Palliative Care Program at a US Children’s Hospital. International Journal of Palliative Nursing,
2007, Vol.13 No11.
• Institute of Medicine of the National Academies. When Children Die-Improving Palliative and End
0f Life Care for Children and Their Families. The National Academies Press. 2003
• Wolfe, J., Hinds, P., Sourkes, B., Textbook of Interdisciplinary Pediatric Palliative Care.
Saunders. 2011
Policy Review Responsibility
HUGS Team, CH Medical Director, CH AVP
Initiated: 10/09
Revised/Updated/Reviewed: 2/2012