A Program for LTC Providers GUIDELINES FOR END-OF-LIFE CARE IN LONG-TERM CARE FACILITIES With Emphasis on Developing Palliative Care Goals

Developed by Missouri End-of-Life Coalition’s End-of-Life in Nursing Home Task Force Department of Health and Senior Services Division of Senior Services and Regulation September 2003

National “Promising Practices” Award 2004 Association of Health Facilities Survey Agencies

Introduction Mission of Coalition is to foster cooperation, education and research to promote high quality care for the dying. Barriers include myths and a lack of education and coordination among nursing homes, nursing home surveyors, and hospice agencies.

Manual Design To help LTC staff and hospice providers correct misinformation. To help LTC staff understand their role and responsibility to provide palliative care. To show LTC staff when and how to set appropriate palliative care goals. Serve as a reference tool and guide to additional resources.

Dying in Nursing Homes By 2020, 40% of Missouri Deaths will occur in nursing homes, according to some sources. 1/3 of nursing home resident now die within the first year of admission. Nursing homes, like all other health care settings, face major challenges in meeting family expectations.

Dying in Nursing Homes, cont. There are discrepancies between the way people desire to die and the way they are dying. 1997 study found people fear reaching the end of their lives on machines and care planning options do not support patient management of the death and dying experience. Palliative medicine has become a medical specialization.

World Health Organization Palliative Care World Health Organization Defines palliative care as the active total care of patients whose disease is not responsive to curative treatment. Control of pain, or other symptoms, and of psychological, social and spiritual problems, is paramount.

Palliative Care, WHO, cont. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment (1990).

WHO expanded definition, six additional points: Regards dying as a normal process; Neither hastens nor postpones death; Provides relief from pain and other symptoms; Integrates the psychological and spiritual aspects of care, fostering growth; Helps residents live as actively as possible until death; and Offers support for the family during the resident’s illness and their own bereavement (1990).

Principles of Palliative Care Respect the dignity of both pt and care givers. Be sensitive and respectful of the pt’s and family wishes. Use appropriate measures consistent with pt choices. Alleviation of pain and other symptoms.

Principles of Palliative Care, cont. Assess and manage psychological pain, social, and spiritual/religious problems. Offer continuity of care of providers. Provide access to any therapy that would improve quality of life-traditional and non-traditional treatments. Provide access to palliative and hospice care. Respect the right to refuse treatment.

Principles of Palliative Care, cont. Respect the physician’s professional responsibility to discontinue some treatments when appropriate with consideration of both patient and family preferences. Promote clinical and evidence-based research on providing care at the end of life.

Identifying Resident for Palliative Care Using hospice criteria, the eligible patient: has been diagnosed with a terminal or life ending illness; has a life expectancy of 6 month or less, as determined by the attending physician and hospice IDT; is seeking palliative care (pain and symptom relief) rather than curative treatment.

Identifying Resident for Palliative Care, cont. understands, as do the family and physician, that artificial life prolonging procedures are not consistent with hospice care; and has been approved for admission to hospice services by the attending physician and the hospice medical director.

LMRP Local Medical Review Policy CMS Guidelines for determining eligibility Examine documentable evidence that “if the disease follows its normal course, the prognoses would be six months or less.” 12 Guidelines including lung disease, heart disease, kidney failure, HIV, stroke, etc. LMRP’s for Demenita and Decline in Health Status found in Manual Appendices. Other LMRP guidelines on the web at: www.iamedicare.com/provider/policies/L13653.htm

Using the Manual Facility education for staff, residents, families and community; Developing/review of policies and procedures for compliance with the principles of palliative care; Establishing goals of care through advance care planning; Understanding regulatory compliance in end of life care planning issues;

Using the Manual, cont. Symptom management with emphasis on issues of pain and other suffering; Teaching staff to recognize signs of spiritual and psychosocial suffering; Establishing effective collaborative relationships with Hospice agencies; Doing effective and ongoing staff orientation and training in EOL issues.

Facility Education Role of Interdisciplinary Team Members Communication Issues Physician/Physician Extenders Therapists MDS Coordinator Licensed Nurses Nursing Assistants Hospice Staff

Facility Education, cont. Clergy Social Service Designee Activity Director/Aides Dietary Manager/Registered Dietician Pharmacist Housekeepers Maintenance

Facility Education, cont. Staff Education In-service education Orientation Team conferences Resident/Family Education Resident Council Family Council Family Meetings Care Plan Conferences