“Let My Daughter Decide!”—Multifactorial Issues in Communication and the Provision of High Quality End-of-Life Care (742)

Abstract

1.Discuss two challenging and parallel cases in hospice care in which family members aggressively decide on the medical plan of care.2.Identify multifactorial issues (spiritual, cultural, psychological, and ethical) that affected the implementation of high quality hospice care in these cases.3.Cite lessons learned and strategies for improving communication and advocacy for patients whose voices are not heard. Hospice and palliative care providers experience multiple dynamic issues with difficult patients and families. Each case is unique and should take into consideration all dimensions that impact the provision of high quality palliative care. AQ, a 57 year old female with metastatic lung cancer, was admitted to the hospice unit for pain, anxiety, and seizures. She was decisional about her health care but deferred to her daughter who wanted less palliative medications to maintain alertness. Her family accused staff of overmedication. Further exploration of psychosocial and cultural dynamics revealed the roles that her African-American descent and Muslim faith played. She received minimal support from her family before getting sick. After multiple discussions, the daughter subsequently revoked hospice. She died in the hospital receiving aggressive “curative interventions”. JM is an 85 year old male with terminal dementia receiving home hospice care. He is of Sicilian Italian descent with five family members providing active care. His wife and oldest son were the primary decision makers but subsequently relinquished their roles and relied on one daughter who demanded wound debridement, blood transfusion, and tube feedings. Multiple family meetings resulted in heightened emotional and physical conflict. His last few days were spent in the hospital where he received parenteral hydration, antibiotics, and tube feedings. His morphine was restricted by the family until the last few moments preceding his death. An intensive collaborative approach was utilized to provide comprehensive and compassionate palliative care in both cases. The biopsychosocial and spiritual approach to care was optimally used by the staff. Despite best efforts, the expected and envisioned outcomes of high quality palliative care may not necessarily occur. There is a need to continually explore and address multiple sources of conflict and struggle with the best available resources.