Early findings from a study of 319 families suggest that use of an innovative, telephone-based symptom monitoring and coaching system during home hospice care leads to significantly decreased patient symptoms in the final weeks of life.
Twelve hospices in four different states participated in the study.
About half of the hospice families (153) were randomly assigned to receive the symptom care intervention and the other half (166) received usual care (symptom reporting alone).
All families received hospice care.
Patients who participated in the symptom care intervention had significantly less symptom severity than those who received usual hospice care alone.
The system also improved the well-being of family caregivers when compared with usual hospice family caregivers.
Patient and caregiver benefits were observed as early as the first day after using the system and this trend continued throughout the hospice experience.
“Automated collection of patient-reported symptoms is increasingly used in oncology, but it has not yet extended to home hospice settings. This is the first study to monitor family caregiver well-being or coach families on how to improve care to their family member,” said lead study author Kathi Mooney, Distinguished Professor of Nursing at University of Utah College of Nursing and Co-leader of the Cancer Control and Population Science Program at the Huntsman Cancer Institute in Salt Lake City, Utah.
“Although this system is the initial prototype version, it clearly shows that using smart technology for symptom monitoring and coaching adds another layer of support during hospice care and provides additional comfort for patients at the end of life, while also helping improve the well-being of family caregivers.”
The automated, telephone-based symptom monitoring system used computer-based technology to have ‘conversations’ with family caregivers about the symptoms in the past 24 hours their family member experienced and also the caregiver’s own well-being.
The patient symptoms that were monitored included pain, difficulty breathing, change in thinking, constipation/diarrhoea, bladder difficulties, nausea/vomiting, fatigue/weakness, negative mood (feeling down or blue), anxiety, trouble sleeping, and poor appetite/trouble eating.
The symptoms tracked for caregivers included fatigue, anxiety, trouble sleeping, and negative mood.
There were two components to the symptom care intervention:
1) automated alerts for unrelieved symptoms reported to the family’s hospice nurse and
2) automated coaching of the caregiver to improve their family member’s comfort and to address their own well-being.
The electronic alert reports were immediately sent to the hospice nurse at the end of the caregiver call.
The hospice nurse could access the report on a mobile device adding an additional communication link between the caregiver and the nurse.
During the call the caregiver was provided automated customised, real-time coaching based on the nature and severity of symptoms the caregiver reported.
This included suggestions such as how to position their family member for greater comfort, or improve breathing, or improve time together such as looking at old photo albums.
For caregivers, suggestions might include how to organise other people to assist, how to schedule time for self, how to improve sleep, or how to decrease anxiety and deal with sadness.
Coaching would also normalise the end of life symptom experience and explain what was happening and what they should discuss with their hospice nurse.
Family caregivers greatly benefited from the monitoring and coaching.
Those who received the intervention experienced 44% fewer days of moderate or severe symptoms when compared to the usual family caregiver group.
Family caregivers play a key role in reducing patient symptom burden during home hospice care, as they make judgments about medication intake and other interventions to improve their family member’s comfort.
The family caregiving experience can be rewarding but also stressful with negative consequences for the caregiver’s health and emotional well-being during bereavement.
Prior research has shown that caregiver distress is closely associated with the severity of patient symptoms, so monitoring and improving both the patient’s care and the caregiver’s well-being is critical to improving end of life care for the whole family.
This study demonstrates that smart technology is additive to care and can increase comfort for dying patients and improve well-being for their family caregivers.