Hospice Caregivers Need Care


A very interesting study out of the University of Kentucky is getting some well deserved attention.  The premise, as reported by ScienceCodex.com, is “hospice caregivers need routine care interventions…”

The study determined that hospice caregivers are themselves “second order patients,” with their own care needs.  The population being studied was family hospice caregivers, but our experience, at Support For Home, indicates that this phenomenon — great stress on hospice caregivers, professional or family, can produce medical issues that need to be addressed.

One of the University of Kentucky researchers put it this way:

It doesn’t matter how well educated you are,” said Wittenberg-Lyles. “When someone you love is dying and you are in a position to care for them at home, your home turns into a hospital room and key decisions need to be made hourly. Clinicians should assume that anyone going through the stress and chaos of caring for a terminally ill family member has low health literacy and high needs for education and support.

Again, we would argue that approach needs to be extended to all hospice caregivers, whether family, nurses, social workers or CNAs / HHAs.  Hospice caregivers are very special people.  We need to treat them as such.

Best wishes.  Bert

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8 responses to “Hospice Caregivers Need Care

  1. This is an interesting study, but like many qualitative ones, may be flawed by not differentiating between hospice caregivers with differing initial convictions regarding a caregiver’s role.

    It’s been my experience that “burnout” is often the result of a discrepancy between a goal and what’s possible. For example, if the goal of my hospice caregiving is to provide whatever comfort is possible and reasonable to my loved one and at the same time learn about myself, then my burnout threshold may be different then for someone who is struggling with end of life issues.

    Grouping subjects by how they view the goals of caregiving is more than good science. It has significant outcomes for how we handle potential burnout. Do we try to educate caregivers in order to prevent or reduce burnout, or do we focus on it’s inevitability when expectations don’t match reality?

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    • I agree with your conclusions, Stan, objectively. If folks approach hospice care with very realistic goals, it helps. However, that is very rarely going to overcome the trauma of hospice care, because so few people view hospice as a positive thing. We have some Home Care Aides who feel that participating in hospice care is a privilege and a mission. There goal is to help the dying to experience the best possible exit. For folks with that mind set, it’s a great and rewarding vocation. Even for them, however, a toll is taken, over time.

      Thanks very much. Bert

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