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CHI STANDARDS OF HOSPICE CARE FOR CHILDREN
These standards were developed in 1993 by the CHI Scientific Review Board, chaired by Constance Battle, MD, and Bernice Catherine Harper, PhD, and coordinated by Veronica Feeg, PhD.
ACCESS TO CARE
- Principle: Children with life-threatening illnesses and their families have special needs. Hospice services for children and their families offer developmentally appropriate palliative and supportive care to any child with a life-threatening condition in any appropriate setting. Children are admitted to hospice services without regard for diagnosis, gender, race, creed, handicap, age, or ability to pay.
- Standards:
A.C.1. Hospice care services are accessible and their families in a setting that is desired and/or appropriate for their needs.
A.C.2. The hospice team is available to provide continuity of care to children and their families in the home and/or in an institutional setting
A.C.3. The hospice program has eligibility admission criteria for the children and families they serve. Care plans are developed which take into consideration the child's prognosis and the child and families needs and desires for hospice services. Admission to the hospice care services does not preclude the child and the family from treatment choices or hopeful, supportive therapies.
A.C.4. The hospice program provides information to the community and referral sources about the services that are offered, who qualifies, and how services may be obtained and reimbursed.
CHILD AND FAMILY AS A UNIT OF CARE
- Principle: Hospice programs provide family-centered care to enhance the quality of life for the children and family as defined by each child-and family unit. It includes the child and family in the decision-making process about services and treatment choices to the fullest degree that is possible and desired.
- Standards:
C.F.U.1. The unit of care is child and family. Hospice provides family-centered care. The family is defined as the relatives and/or other significant persons who provide physical, psychological, social, and/or spiritual support for the child.
C.F.U.2. The hospice program recognizes the unique, personal values and beliefs of all children and families. The hospice respects and maintains, as possible, the wishes and dignity of every child and his or her family.
C.F.U.3. The hospice program encourages that children and their families participate in decisions regarding care, including discontinuation of hospice care at any time, and maintains documentation related to consent, advance directives, treatments, and alternative choices of care.
C.F.U.4. The hospice program provides care that considers each child's growth, development and stage of family life cycle. Children's interests and needs are solicited and considered, but are not limited to those related to their illness and disability.
C.F.U.5. The hospice seeks to assist each child and family to enjoy life as they are able, and to continue in their customary life-style, functioning and roles as much as possible, especially helping the child to live a normal life as is possible.
POLICIES AND PROCEDURES
- Principle: The hospice program offers services that are accountable to and appropriate for the children and families it serves.
- Standards:
P.P.1. The hospice program establishes and maintains accurate and adequate policies and procedures to assure that the hospice is accountable to children, their families, and the communities they serve.
P.P.2. The hospice agency is in compliance with all local, state and federal laws and regulations that govern the appropriate delivery of hospice care services.
P.P.3. The hospice program provides a clear and accessible grievance procedure to families outlining how to voice complaints or concerns about services and care without jeopardizing services.
INTERDISCIPLINARY TEAM SERVICES
- Principle: Seriously ill children with life-threatening conditions and/or facing terminal stages of an illness and their families have a variety of needs that require a collaborative and cooperative effort from practitioners of many disciplines, working together as an interdisciplinary team of qualified professionals and volunteers.
- Standards:
I.T.1. The hospice program provides care to the child and family by utilizing a core interdisciplinary team which may include: the child, the family and/or significant others, physicians, nurses, social workers, clergy, and volunteers.
I.T.2. Representatives of other appropriate disciplines are involved in the team as needed, i.e., physical therapy, occupational therapy, speech therapy, nutritional consultation, art therapy, music therapy. The team might also include psychologists, child life specialists, teachers, recreation therapists, play therapists, home health aides, nursing assistants, and other specialists or services as needed.
I.T.3. The hospice core team meets on a regular basis and an integrated plan of care is developed, implemented and maintained for every child and family.
I.T.4. The hospice staff professionals are qualified in their particular discipline by training, experience, certification and/or liscensure. Complete orientation, training and continuing education are provided to each hospice staff member.
I.T.5. The hospice has an active volunteer program. All volunteers are carefully and appropriately selected, trained, supervised and evaluated, at least annually, by hospice professionals.
I.T.6. All hospice personnel receive educational, psychological and emotional support appropriate to their situations needs and desires.
I.T.7. The hospice core interdisciplinary team meets at least every two weeks or sooner if needed to review and update all plans of care.
CONTINUITY OF CARE
- Principle: Hospice is an integrated system of home and inpatient care. Hospice provides a consistent continuum of care in all settings from when admitted to the end of bereavement services.
- Standards:
C.C.1. Hospice services are available to children and their families on a consistent basis: seven days a week and 24 hours a day institutions or at home.
C.C.2. Appropriate hospice team members are available to children and their families on an on-call basis when the office is closed.
C.C.3. The hospice program has a communication system that assures confidentiality and privacy, and can be used to update team members about each child and family's status so that needs can be addressed as soon as possible.
C.C.4. All children and families receive a timely and comprehensive assessment of their physical, psychosocial, emotional, spiritual, and financial needs.
C.C.5. The hospice team, with the family, develops and integrated, written, interdisciplinary plan of care for each child and family. The plan addresses the unique and individual needs of the child and family including: assessment, identified present and potential problems, interventions and the type and level of services to be provided.
C.C.6. The hospice team addresses and documents the concerns, needs, and desires of the child and family in developing and implementing the plan of care. This document is updated as indicated by the changing status of the child or family.
C.C.7. The hospice agency maintains appropriate documents and clinical records. The clinical record includes properly executed consents for medical/hospice treatment. Confidentiality of hospice records is maintained.
PAIN AND SYMPTOM MANAGEMENT
- Principle: Children should be as symptom free as possible, and pain and/or other symptoms of their illness should be managed to achieve the greatest possible comfort.
- Standards:
P.S.M.1. The hospice team assists the children in achieving comfort through the most effective treatments available.
P.S.M.2. Palliative therapies are discussed with children and their families and provided to children to ensure the most effective and adequate pain symptom management.
P.S.M.3. Alternative methods of pain and symptom management are discussed and incorporated into care of the child as appropriate.
BEREAVEMENT PROGRAM
- Principle: Families of children who die may continue to need appropriate professional and supportive services for a period following death
- Standards:
B.P.1. The hospice program has a structured active bereavement program. Bereavement services are provided to the surviving family member's and/or significant others. Special attention may need to be given to siblings who may not be able to articulate their needs for support.
B.P.2. The level and type of services provided are determined by the family member(s) and appropriate hospice team members.
B.P.3. Bereavement services are available and provided for at least thirteen months following the death of the child, extending throughout the second year if possible.
UTILIZATION REVIEW/QUALITY IMPROVEMENT
- Principle: The hospice program should monitor and ensure the appropriate allocation and utilization of resources and effectiveness of services.
- Standards:
U.R.1.The hospice program has a written continuous quality improvement and utilization review program. The program includes criteria to assess the overall functioning components of the hospice program and the effectiveness of its services.
U.R.2.The continuous quality improvement and utilization review program is an ongoing process and implemented on a regular basis with results of the evaluation that are reported to appropriate individuals and /or committees for action.
U.R.3.The hospice program provides a written evaluation tool for all recipients of services to document their satisfaction or dissatisfaction with the services received. A written plan outlining how evaluation information will be used to improve services is available to all consumers.
©1993 Children's Hospice International
CHI'S SCIENTIFIC REVIEW BOARD 1990-1993
| Constance Battle, MD |
Art Kohrman, MD |
| Charles Corr, PhD |
Ida Martinson, PhD, RN, FAAN |
| Jean Fergusson, MSN, CRNO |
Rev. Hal Meyers |
| Bernice Catherine Harper, PhD |
Robert Milch, MD |
| Doris Howell, MD |
Phil Pizzo, MD |
| Patti Jamieson |
Bernice Wilson |
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