Dr. M. Cary Reid, Dr. Ronald D. Adelman, Dr. Veerawat Phongtankuel, and their colleagues conducted a comprehensive study of home hospice care.

At NewYork-Presbyterian, geriatricians and palliative medicine physicians have long been committed to identifying the needs of patients at the end of life as well as those of their caregivers. As part of their mission, they conduct ongoing research to find ways to empower and support family caregivers and put systems in place within home hospice that can anticipate the needs of patients and ease their suffering at end of life.

According to the National Hospice and Palliative Care Organization, more than 1.55 million Medicare beneficiaries received hospice care in 2018. A majority of hospice care is delivered in the home with significant involvement of patients’ family caregivers. With that in mind, faculty in the Division of Geriatrics and Palliative Medicine at Weill Cornell Medicine, in collaboration with the Visiting Nurse Service of New York, conducted a comprehensive study to explore quality measures and end-of-life symptoms in home hospice care.

Quality Measures from the Caregivers’ Perspective

How do caregivers – the majority of whom are family members – perceive burden, satisfaction, and quality of end-of-life care? While this might be a common question, the authors note that, to their knowledge, no study has examined correlates of these caregiver-reported quality measures in the context of home hospice care. With the hypothesis that higher patient symptom burden as reported by the caregiver would be independently associated with higher caregiver burden, lower satisfaction with care, and lower quality of end-of-life care, the researchers designed a cross-sectional study recruiting family caregivers. The study involved a phone survey interview of 391 participants whose patients were discharged from home hospice care.

Results of the study, published in the July 2020 issue of Palliative Medicine Reports, showed:

• Caregiver comfort in managing patient symptoms during the last week on hospice was associated with all three quality measures examined: caregiver burden, caregiver satisfaction, and quality of end-of-life care
• Both higher caregiver-reported symptom scores and caring for patients who did not die in hospice were associated with higher caregiver burden and lower satisfaction with care, but not with quality of end-of-life care
• Caregivers of patients who died on hospice compared with those discharged alive (i.e., hospitalized or discharged for other reasons) had lower caregiver burden scores and higher caregiver satisfaction

The researchers’ finding that caregivers’ comfort level in managing symptoms during their patients’ last week on hospice was independently associated with all three quality measures is noteworthy. The authors speculate that caregivers who are more comfortable managing symptoms may feel they are providing better palliative care, which may lead to better reported quality measures. This finding suggests that helping to improve the knowledge and skills of caregivers in understanding and managing symptoms is beneficial.

The authors conclude that caregiver-reported quality measures – caregiver burden, caregiver satisfaction, and quality of end-of-life care – were associated with symptom-related variables and support the need for additional research and strategies to improve symptom management for patients and support caregivers in providing quality care in the home hospice setting.

Symptom Management at End of Life: Supporting Patients and Caregivers

As part of their study, the researchers also looked at patient symptoms at the end of life. Symptoms, including pain, shortness of breath, and fatigue, are common among terminally ill adults. Many of these can be effectively managed during end-of-life care, yet much remains unknown regarding their prevalence and correlates in home hospice care. To better understand the prevalence and intensity of symptoms at the end of life, the research team looked at caregiver-reported symptom scores using the Edmonton Symptom Assessment Scale (ESAS) in the home hospice setting.

The Weill Cornell researchers partnered with Visiting Nurse Service of New York Hospice and Palliative Care, which serves home hospice patients in the New York City area. In addition to providing home visits by an interdisciplinary team of physicians, nurses, social workers, and spiritual care counselors, the organization provides patients with a medication kit for pain and symptom management.

During the phone survey interview, caregivers were asked to recall whether the patient experienced any of nine symptoms included in the ESAS (pain, shortness of breath, nausea, tiredness, drowsiness, lack of appetite, depression, anxiety, and well-being) during the patient’s last week on hospice and to rate the intensity of the symptoms on a 0 to 10 scale.

As published in the May 2020 issue of the Journal of Palliative Medicine, the researchers found that multiple symptoms were present, and many were perceived to be of high severity. Younger patients and caregiver level of comfort managing symptoms were associated with higher caregiver-reported ESAS scores. They concluded that home hospice patients experience multiple symptoms and further work is needed to improve symptom management in this population to better support patients and caregivers while reducing suffering at the end of life.