1. Navigating the Journey Home: Palliative Care, Home Nursing and Hospice
Carol May RN, MSN, MBA,CHPPN
Supportive Care Program
Children’s Hospital of Pittsburgh of UPMC

2. Objectives
Discus the differences between pediatric palliative care and hospice care
Increase knowledge on the differences between pediatric and adult end of life care
Describe the resources available for caregivers and parents

3. What is Pediatric Palliative Care?
Palliative care for children is the active total care of the child’s body, mind and spirit, involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
Health providers must evaluate and alleviate a child’s physical, psychological and social distress.
Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in the community health centers and even in the children’s home. (WHO, 1998)

4. Adapted from Ferrell, et al. 1991
Physical
Functional Ability
Strength/Fatigue
Sleep & Rest
Nausea
Appetite
Constipation
Pain
Psychological
Anxiety
Depression
Enjoyment/Leisure
Pain Distress
Happiness
Fear
Cognition/Attention
Quality of Life
Social
Financial Burden
Caregiver Burden
Roles and Relationships
Affection/Sexual Function
Appearance
Spiritual
Hope
Suffering
Meaning of Pain
Religiosity
Transcendence
Adapted from Ferrell, et al. 1991

5. Applicability of Palliative Care
Bereavement Care
Therapy to Modify Disease
Palliative Care
Therapy to Relieve Suffering and/or Improve Quality of Life
Presentation/Diagnosis
Illness
Death
Acute
Chronic
Advanced
Life-threatening

6. Demographics 53,000 US children between 0-19 years die each year
Infants < 1 year account for half
75-85% of children die in the hospital – many in intensive care
900,000 birth tragedies/year
Institute of Medicine, 2003

7. Distinction between Adult and Pediatric Palliative Care
Impact of childhood illness and death
Death of a child is a “tragedy”
Scientific and technological
Children survive many near death crises due to advanced critical care.
Technology has increased viability for births, but has increased neonatal deaths.

8. Distinction between Adult and Pediatric Palliative Care
Developmental level of the child
Child’s ability to communicate and understand affects how care providers speak, examine, assess and provide support.
Must use family centered approach to care.
Children’s understanding of death is influenced by their developmental level, past experiences and culture.

9. Death and Dying in America
Disparity between the way children die, and the way they want to be cared for:
Not natural for a child to die before a parent
Child and family fears abandon from health care providers
Families are uncertain how to provide physical care and adjust to role changes.
Transition of care
Who knows the child best
Who can participate in developing the transition plan
Communication amongst providers

10. Death and Dying in America
Death of a child ripples through a community, effecting many groups, friends, children and organizations.
Families often drain their life savings to cover costs of care
Grandparents grieve the loss of grandchild and the loss experienced by their child.

11. Who can benefit from pediatric palliative care ?
Life threatening conditions for which cure may be possible but treatment may fail – Cancer
Conditions where intensive treatment may prolong life but premature death is likely to occur
– Duchene muscular dystrophy

12. Who can benefit from pediatric palliative care?
Progressive life limiting conditions with no available life prolonging treatment – Chromosomal abnormality
Conditions that are stable but secondary complications increase risk for death – Severe cerebral palsy

13. General Principles of Hospice and Palliative Care for Children
Precepts of palliative care for children
Child and family as unit of care
Attention to physical, psychological, social and spiritual needs
Interdisciplinary team approach
Education and support of child and family
Extends across illnesses and settings
Bereavement support
Precepts of palliative care are provided in your handout.
Child and family centered care is based on the view that quality is subjective. Also must include the cultural, religious, and personal values and wishes of the child and family.
Palliative care strives to meet the physical, psychological, spiritual and social needs of the child and family.
Uses an interdisciplinary team approach to care that is driven by the child and family’s goals for care.

14. How the Death is different
Pain modalities
PCA or IV therapy
Still SL route
Symptoms
Less delirium with younger children
Pay attention to the terminal secretions
Physical changes
Less mottling
Urination

15. Immediate Goals
Improve pain and symptom management and end of life care for children with life threatening illness
Empower families to care for children in their last days of life at home
Provide education to staff, physicians and orientation programs
Establish affiliations with local hospices

16. Communication Crucial to palliative care
Chronic illness is a family experience
Communication is a major area of need
Imparting necessary information so that child and family may make informed decisions
Requires interdisciplinary collaboration
In a recent study, when nurses were asked what they wish they were taught in nursing school related to terminally illness, the number one response, was how to talk to patients/families about dying (Coyne 1999).
The ability to communicate influences therapeutic roles to:
Provide ongoing opportunities for fully informed choices
Offer support
Allow one to comfortably ventilate fears while initiating dialogue
Assert control
Disclose feelings
Be assertive not aggressive
This may also help dispel myths about illness/treatment

17. Responding to Ethical Issues
Ethical issues are inevitable in end-of-life care.
Ethical issues are profoundly influenced by values, religion, culture, etc. (Davies, et.al.,1998)
End-of-life care raises questions about meaning:
Dependency, pain and suffering
Conflicts prevented by good communication and shared decision making
Our role in addressing ethical issues:
Promote family centered care
Determining and respecting patient’s preferences, taking into account their stage of development and legal requirements.
Be knowledgeable about ethical and legal dimensions of professional practice
Act as a role model
Work as a member of an interdisciplinary team and provide information to patients and families so they can make informed decisions with the full range of options and the consequences of each option.
Understand societal resources
Be alert to organizational conflicts of interest

18. Benefits of a Partnership (Home Care)
Understand the unique care needs of the patient
Understand the family dynamics
Understand the stressors in the home
Can share how the child responds to different types of care

19. Benefits of a Partnership (PC)
Knowledge of specific hospice and palliative care services
Introduce services in hospital to decrease child and family's anxiety of new service
Assist in role transition for family
Educate Home care nurses on the benefit of hospice or home based PC for the patient and family
Education to hospice staff that has a higher percentage of adult patients
Nurses, volunteers, social work

20. Benefits of a Partnership (Hospice)
Increase comfort level of staff with medications and treatment plans
Participation in hospital's interdisciplinary rounds
Consistent treatment plans increase comfort level and exposure to pediatric dosages
Interdisciplinary cooperation
Consistent reporting and descriptions to the child and family about what to expect

21. Benefits or Partnership
Bereavement plan started in hospital
Grief assessment completed by palliative care team and relayed to hospice staff
Develop joint bereavement groups
Hospice staff familiar with history
Report given by a team that has already provided care

22. Benefits of Partnership
Hospice introduced to family while inpatient and starts to build rapport
Participation in family meetings while planning discharge
Both palliative care and hospice cares for patient at home
Parents do not have feeling of abandonment from health care institution
Hospice staff has pediatric resource

23. Successful! Orders are shared amongst all
Everyone in the home is communicating the same message
Patient, family and home care staff feels supported
Grief and bereavement services are provided to family AND home care staff

24. Never be afraid to try something new, amateurs built the Ark, professionals built the Titanic.
-Anonymous