In 2005, Children’s Hospice International developed the Children’s Program for All-Inclusive Coordinated Care for Children and Their Families (ChiPACC). Despite being developed over fourteen years ago the guidelines still hold great insight into what all-inclusive care for children diagnosed with life-threatening conditions looks like. Today, we hope to condense the 12-page document into a shorter, more comprehensive synopsis, which is developed through four separate dimensions.
The first dimension concerns the interdisciplinary team. The guidelines begin by stating that programs must be geographically accessible, culturally competent, provide accurate information, and have the ability to access treatments meant to cure or extend life. As providers develop a plan of care the child’s interests, fears, values, and point of view must be considered. This is also to say that each family is unique in its structure, interpersonal relations, and methodology for decision-making and that the plan of care should also take this into account. Ultimately, the program’s goal should be to encourage all affected persons to live as normal a life as possible, while also establishing new care-taking roles.
The program must be non-discriminatory, respectful of all persons, and protective of confidential information. Educational materials should be phrased in simple, understandable terms in the primary language of that location. Treatments and services should seek to maximize positive outcomes while limiting negative impact as best they can. Adequate support should be provided in addition to ethics consultations as needed. At the center of every care team will be a core team, which will be held responsible for admissions, assessments, developing the plan of care, and creating timely congruency among the countless providers which may include therapists, specialists, and other providers. Each member of the care team will be held responsible for continuing to pursue additional education and training. Meanwhile, any decisions the care team makes should allow for participation of the child as they are able. In all decision-making situations, it is essential to recognize that there is no one right way to grieve, cope, make decisions, or die. Bereavement programs should be made available to any person involved in the care of the affected child. Finally, each program is responsible for adhering to federal, state, and local regulations.
The second dimension concerns the integration of curative care with palliative care. To do so goals must be realistic, periodically re-evaluated based on new assessment findings, and those assessments should be included when discussing the implications for planned services, treatments, or therapies. The assessments should be standardized across all settings of care to allow for accurate comparisons which revolve around the patient’s individual situation including all dimensions of wellness and development.
The third dimension concerns providing care from a single entry into the system, from which other interdisciplinary services will be made available. For this to become feasible care must be continuously integrated between all disciplines, with essential services being made available 24-hours a day. Providers across various settings must communicate on the patient’s current state, while utilizing confidential and secure forms of communication. To increase accessibility admissions must be barrier free to facilitate ease of entry. Each care setting should recognize the importance of evidence-based practice and the way in which research supports evidence-based practice. This may be done by educating providers on the significance of research, collaborating with other organizations, sharing toolkits for care, and participating in research in each program’s respective setting.
The fourth dimension concerns the importance of redistributing funds so that the range of services available may expand and follow the child and family into the most appropriate care setting.
These guidelines may benefit other programs and we hope this brief overview provides some insight into the wisdom contained into clinical toolkits such as this. We encourage you to take a look at the Children’s Internal Hospice toolkit yourself or explore other clinical toolkits, which can be found on our website under Clinical Guidance > Concurrent Care Toolkits.