Learning From Families — In Cases in Which It’s “Too Late”

One spring, we met in person with the head of a hospice organization, anticipating we would be talking about instituting THE HUMAN JOURNEY® as a thorough-going program of her hospice.

Our conversation, based on a rich rapport, took us someplace else.

We were impressed with Candida’s (a pseudonym) conscientiousness. She had been haunted by the searing experience of a family member whose mother had died in her hospice under much-less-than-ideal circumstances, particularly from a psychosocial perspective.

To Candida’s great credit, she wanted to know the truth: Where had the hospice fallen short? What could they have done, and what might they do in future, to alleviate the suffering of families during this hardest of all possible times?

To improve hospice service, we proposed interviewing the small percentage of family members whom the hospice may not have served as well as it would have wished. The hospice knew who these families were. They had heard from them. Some of them loudly.

Those conversations were profound. And they were long. Families need to tell the detailed story of how their loved one’s condition had worsened.

Family members remember the dates and the days of the week. They often remember what staff members told them at the time and when, and how they felt about it then. Sometimes, in the telling, they think differently about what they heard.

In the strongest situations, when family members weren’t sure what to do, hospice staff told them, “There are two choices: you can’t make a wrong one.” They would use their experience to guide families along, holding the family’s point of view. As one family member phrased it, “They were ahead of my curve.”

Yet still, a few situations were revealing. From the interviews, now with staff as well as family members, where staff had fallen short seemed to me to have two causes, one an occupational hazard of caregiving work and the other something they could hardly have been expected to provide, given they were never trained to do it.

First, the natural accretion of years in a hospice job may have made the emotional labor required for staff to do the job well seemingly impossible. And, without the institutional and personal supports to be able to access self-care, staff members would be almost certain to armor increasingly against the work they had originally chosen.

Second, nursing and medical schools have historically failed to prepare future professionals for the essential teaching roles that they have with patients and families. Consequently, when they are called upon to teach—daily—they do just as they have been taught. They convey information—and call that teaching. In their understandable states of distress and confusion, family members may misunderstand that information. They may be overwhelmed by it. They may forget it. They may deny it. They may not hear it at all.

Yet, without learning, there is no teaching.

As developer of professional staff ranging from medical to clergy to law enforcement to working educators, we could see that the hospice staff needed first to experience the difference between what they thought of as teaching and communicating — and how different a patient-centered approach felt like from a patient or family member’s point of view.

It would be quite a turnaround.

THE HUMAN JOURNEY® creates and provides programs for hospice, healthcare, and mission-driven institutions to address the socio-emotional, cultural, and capacity needs of staff that impact their longevity in their work, their effectiveness and humanity with those they serve, and the culture of their organizations. 

Let us hear the story of your organization—your story of staff and patient/client experience.


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