Individuals dying from cancer often live out their lives at home with a host of poorly controlletd 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is challenging as care strategies and recommendations from previous encounters with healthcare providers become quickly outdated.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 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 12 symptoms common at entj of life, 2) automated alerting of the hospice RN case manager about symptoms that have exceeded a pre-set threshold for symptom severity or distress, 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 sample will consist of 300 spouse/partner caregivers of cancer patients, 50+ years of age newly admitted to a home hospice program and their hospice RN case manager. Caregiver participants will be randomized to the SCP-Hospice intervention or to usual hospice care.
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 RN satisfaction with the SCP system. In addition, utilizing data from the other two research projects in this program project, two synergistic aims will examine the impact of the SCP intervention on the quality of hospice RN-caregiver communication about unrelieved symptoms and determine whether caregivers utilizing SCP-Hospice experience less depression and improved adjustment during bereavement in comparison to usual care.
Improving end-of-life care and the suffering caused by poorly controlled symptoms is an important public health concern. The development of an automated telephone symptom support system that assists caregivers in providing end-of-life care has the potential to enhance the management of common end of life symptoms, thus reducing the suffering of patients at end of life as well as the suffering of their spouse/partner caregivers.