Hospice and End-of-life Symptom Monitoring & Support Using an Automated System Designed for Family Caregivers

Individuals dying from cancer often live out their lives at home with a host of poorly controlled symptoms. Ineffective symptom management results, in part, from inadequate monitoring of patients once they leave the treatment-focused arena of the clinical setting. The changing pattern of symptoms is challenging as care strategies and recommendations from previous encounters with healthcare providers become quickly outdated. The burden of end-of-life care largely falls to family caregivers, usually a spouse or partner, who feel enormous pressure to provide physical and supportive care but often lacks the knowledge and skill resulting in significant caregiver burden and distress that may extend into bereavement.

This prospective, clinical trial proposes to develop and test a telecommunication system, Symptom Care by Phone- Hospice that has been designed to bridge the divide between home and palliative care support for patients at the end of life and their family caregiver. SCP-Hospice has three elements: 1) daily monitoring of symptoms common at end of life, 2) automated alerting of the hospice nurse case manager about symptoms that have exceeded a pre-set threshold for symptom severity or caregiver distress about symptoms, and 3) automated, just in time, tailored care management strategies for the caregiver to implement to address the patient's symptoms. Caregivers call the SCP-Hospice system daily to report patient symptoms and then are immediately provided automated, tailored care suggestions paired to the specific symptom profile.

The specific aims of the study are to test whether the SCP-Hospice intervention reduces severity and distress from 12 different symptoms and whether it decreases caregiver burden, anxiety, depressed mood and distress about the patient's symptoms and improves caregiver sleep when compared with usual care. The mechanisms that explain how SCP-Hospice affect these outcomes also will be explored. Other aims will compare patient care strategies utilized by caregivers and evaluate caregiver and Hospice nurse satisfaction with the SCP system.

Patient/Caregiver Dyad Inclusion Criteria:

• Both patient and caregiver are adults age 18 or over
• Patients has a limited life expectancy and has histological diagnosis of cancer
• Caregiver is caring for a family member with a limited life expectancy and admitted to one of the participating home care hospice or palliative care programs
• Caregiver is English speaking and writing
• Caregiver has access to a telephone on a daily basis
• Caregiver is cognitively and physically able to use the phone unassisted and complete questionnaires.
• Patient is assigned to a nurse case manager who has consented to participate in the research project
• Caregiver and patient intend to reside in the local area until the time of the patient's death

Exclusion criteria

• patient not being cared for by a partnering hospice
• patient without a histological diagnosis of cancer