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

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

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)

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

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

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

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.

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.

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

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.

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

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

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.

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

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

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

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

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

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

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

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

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

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

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