Hospice Aides: The Eyes and Ears of End-of-Life Care

The Perspective of Hospice Aides

Nursing assistants and aides are among the unlicensed healthcare personnel who comprise a significant component of the healthcare workforce. In hospice care, these aides deliver what many patients and families would consider the most vital and valuable aspects of end-of-life care.^[1,2,3] Aides provide bathing and other personal care essential to patient comfort. They also offer psychosocial and spiritual support through their intimate relationships, presence, and listening.^[1] It is not uncommon for the hospice aide to provide the interdisciplinary team with the most critical perspectives on the patient's fears, family dynamics, unresolved conflicts, or spiritual distress.^[4] Thus, the first half of the title of a recent article,^[5] "We're the Eyes and the Ears…" is very fitting. Unfortunately, the second half of the title, "…but We Don't Have a Voice," is also true.

This study provides a unique perspective from these caregivers, obtained through qualitative research that included focus groups, during which the aides described their role in patient care and as members of the interdisciplinary team. After participating in focus group discussions, aides were directly observed providing in-home hospice care. The researchers who shadowed the aides in the home setting took detailed field notes on how the aides communicated and interacted with family caregivers and other patient care providers. This resulted in very rich descriptions of the experiences of the aides and the many unrealized opportunities to include them in the care of seriously ill and dying patients and their families.

Three themes emerged from this qualitative analysis, which indicate that the valuable contributions of hospice aides are not well recognized or appreciated. These themes are reflected in the article's title:

Hospice aides are the "eyes and the ears" of the hospice team, because they are in a position to most closely monitor the patient;
Hospice aides are "kept out of the loop" by team members with respect to patient information and other issues; and
Hospice aides "have no voice" because they are not given opportunities to voice their opinions on patient care.

These themes suggest that hospice aides are inadequately integrated into the interdisciplinary team. Hospice aides perceive that they are less valued than other members of the team.

Viewpoint

Hospice aides enhance care for patients and family caregivers at the end of life. Greater attention to their contributions, and efforts to make them equal partners on the interdisciplinary team, will be essential as we face an increasing need for end-of-life care. A convergence of factors, including an aging population and a high rate of chronic illness, is driving this demand and contributing to a professional workforce shortage. Hospice aides and other unlicensed personnel will undoubtedly step into the void and play significant roles in expanding access to quality end-of-life care.

This qualitative study makes a valuable contribution to hospice and palliative care by raising awareness of the need to recognize and nurture the contributions of hospice aides. The study also has tremendous application to other unlicensed personnel across settings of care, as the eyes, ears, and voices of technicians, transporters, hospital aides, and others are probably also seldom recognized.^[6,7]

Improving our understanding of the role of hospice aides will enhance the integration of aides into the interdisciplinary team, improving patient and family outcomes as well as retention and support of this critical component of the hospice workforce.

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