The following is information designed to give providers and surveyors a greater understanding of ICF/DD, ICF/DD-H and ICF/DD-N facility types and hospice recommendations.

When an individual becomes terminally ill, difficult decisions have to be made as to whether or not the individual may continue to be cared for in their own home.

An individual who becomes terminally ill and lives in an ICF/DD, ICF/DD-H, or ICF/DD-N should not be required to be transferred out of that facility in order to comply with California Department of Public Health, Licensing & Certification requirements. A dignified death at home may be an option for individuals in ICF/DD, ICF/DD-H or ICF/DD-N facilities as long as the individual’s care needs are adequately met consistent with their wishes as expressed, or their best interest.

The following recommendations are based on current law, regulations and community standards for ICF/DD, ICD/DD-H and ICF/DD-N providers who are considering working with a hospice agency to provide care to a terminally ill client in their home.

This information is offered as a reference for the licensing & certification issues related to hospice in the areas of outside services, client rights, health and safety, and active treatment, and are consistent with the state and federal requirements if properly implemented. 

Funding

Reimbursement negotiations should be completed prior to the initiation of hospice services in the ICF facility.

Hospice care may be funded through various resources:

• Medi-Cal, if the individual is a Medi-Cal beneficiary.
• Medicare.
• Regional Center.
• Private pay arrangements.
• Private health care insurance. (Benefits may be paid for up to one year)

It is generally understood that the Hospice benefit will be paid to a single provider. Therefore, under most circumstances, the Hospice benefit will be paid directly to the Hospice and the Hospice would then reimburse board and care fees to the provider.

Services

A hospice agency and ICF/DD, ICF/DD-H or ICF/DD-N provider that is providing services jointly to an individual client must develop a written contract prior to the commencement of services. The contract should address the following issues:

• Client eligibility, desire for, and the choice of hospice services.
• Client rights and confidentiality.
• Orientation and continuing education of staff caring for the client.
• Hospice staff access to and communication with facility staff, and development of a coordinated plan of care.
• Documentation of changes in client’s condition and appropriate palliative care provided to respond to the decline in the client’s condition, consistent with the client’s wishes or best interest and the individual plan of care.
• Documentation of services provided in each entities’ clinical records that ensures continuity of communication and easy access to ongoing information.
• Role of any hospice vendor in delivering supplies and medications.
• Ordering, renewal, delivery, administration, and management of medications, and destruction of unused medications.
• Role of the attending physician and processes for obtaining and implementing physician orders, as well as reviewing/discontinuing physician orders no longer required, as evidenced by the client’s condition.
• Communicating the client’s change of condition.

The hospice agency and the ICF/DD, ICF/DD-H or ICF/DD-N administrative staff should share common philosophical values in end-of life care and the active treatment concept of maintaining function to the maximum extent possible in the face of a deteriorating condition.

The facility will be required to revise the active treatment plans and goals in order to simplify the dual roles of the facility and the hospice in the provision of palliative care, and in the identification of needed supports for the effectiveness of the team approach. Active treatment programs may be as simple or as elaborate as the level of functioning of the individual client permits, and his/her receptiveness to the developed treatment program allows.

The Comprehensive Functional Assessment (CFA) and the Individual Program Plan (IPP) must be revised and updated when a client elects the hospice benefit, and also as the client’s needs change. The ICF/DD, DD-H or DD-N must notify the hospice agency when the resident experiences a change of condition. The facility must continue to meet requirements for notifying the physician, family, and/or the client’s representatives of a change in condition. The procedures for notification may be addressed in the coordinated plan of care. The facility must inform the hospice agency of new facility staff and facilitate staff’s orientation by the hospice.

Coordination of Care Practices

The hospice agency and ICF/DD, DD-H or DD-N facility must provide on-going training to applicable staff, as needed, regarding the hospice philosophy, the ICF/DD, DD-H and DD-N regulatory requirements, and the implementation of the individuals’ coordinated plan of care. Orientation and training information must be given to, and understood by, all direct care staff before hospice care is given to the clients.

Both the facility and the hospice should include key managerial staff in contract and procedural negotiations.

The ICF/DD, DD-H or DD-N facility provider and the hospice agency must open lines of communication centering on client’s needs, with input from their families and/or authorized representatives.

The ICF/DD, DD-H or DD-N facility provider, the regional center, and the hospice agency must communicate, establish, and agree upon a coordinated plan of care that reflects a philosophy consistent with all requirements, and is based on an assessment of individuals’ needs and the unique living arrangement in the ICF/DD, DD-H or DD-N facility. 

The coordinated plan of care identifies all services necessary to meet the physical, psychosocial, medical, and spiritual needs of the client/family as reflected in the coordinated plan of care, and identifies the discipline and provider to be held responsible and accountable for each intervention.

Assessment for Pain/Comfort

The coordinated plan of care describes the responsibilities of each entity regarding the assessment and management of pain and discomfort.

If pain management is an identified need, procedures must be put in place to assure that the client receives timely medications and treatments for optimal palliation.

The hospice agency provides education to the ICF/DD, DD-H or DD-N facility staff on the client’s pain management regime, and coordinates with the facility staff to monitor the effectiveness of the pain and symptom control treatments.

The ICF/DD, DD-H or DD-N facility and hospice may continue to utilize their individual forms for care planning. ICF/DD, DD-H or DD-N facilities client-centered and individual program plan and the hospice’s individualized health care plans must reflect the client’s current identified health concerns, complimentary interventions, and consistent palliative goals.

The ICF/DD, DD-H and DD-N and the hospice together must determine a process by which information from the hospice and facility interdisciplinary staff/team will be exchanged when developing and evaluating outcomes and revising the plan of care. The team must actively seek input from the clients and/or their representatives on desired goals.

Regulatory Requirements

The regulatory requirements are specific for each provider. Both providers should be knowledgeable of the basic requirements of the other provider’s regulatory requirements. Each provider should orient the other to its requirements, and may provide ongoing education to meet the needs of each.

The ICF/DD, DD-H or DD-N facility and hospice agency shall maintain compliance with all federal, state, and local laws and regulations. 

The goal of coordination of care for the ICF/DD, DD-H or DD-N facility, in partnership with the hospice agency and regional center, is to ensure adequate care for clients as their conditions decline and needs change. 

Hospice care must support the ICF/DD, DD-H or DD-N requirements for client’s rights and active treatment, which means that the client is enabled to maintain maximum function within the limits of the disease process. 

The ICF/DD, DD-H or DD-N must protect the well being, rights, and quality of life for all clients living in the facility. The facility and hospice agency must also work together to positively support the housemates of the dying client throughout the experience.
Should you have questions about this informative bulletin, please contact Elaine Rawes, RN of my staff at (916) 552-8750, or email her at Elaine.Rawes@cdph.ca.gov.

Sincerely,

Original Signed by Kathleen Billingsley, R.N.

Kathleen Billingsley, R.N.
Deputy Director
Center for Healthcare Quality