I remember when my finger reached for the first number to press on the phone’s keypad.
I hesitated. I silently prayed.
At the last hospice where I worked in grief support, I averaged 50-60 weekly bereavement phone calls. That meant 250 or so families per month. Some calls occurred mere days after patients had died. Others were made near the one-year anniversary of the parent or child or spouse’s death. Because of my access to patient information, and talking with the chaplains, social workers and nurses, I knew details about a patient’s dying and the family’s reactions. In a few moments at a computer, I might read about conflicts between siblings or a spouse’s fears. If I chose to dive deeply into the medical charts, I could learn about the hospice physician’s first visit or the twelfth visit by the home health aide.
Yeah, I knew stuff. And so, I hesitated with this remembered call. This 50-something child had been disappointed in how we cared for his 80-something parent. Truly disappointed.
I’m a cheerleader for hospice. I think every overwhelmed family should have access to a medical, psychosocial, and spiritual “team” in the final weeks/months of person’s life. When I professionally described hospice to current or potential patients, I happily emphasized Medicare covering necessary equipment, the joy of a home health aide giving a “simple” bath to patients, 24/7 phone contact helping caregiver’s cope. And on and on . . .
But what if, at an initial meeting, the hospice staff doesn’t adequately explain hospice’s limits to a family? Or what if a patient’s family—exhausted or selectively listening or both—assumes hospice covers . . . everything? Most of the dying will remain in their homes as “out patients,” not in a hospice facility as an “in patient.” It will be family or friends, educated by a hospice nurse, that give many of the pills or doses to the patient. The nurse (and social workers and chaplains) won’t move in with patients, but will schedule visits to their homes. The hospice benefit will not pay for hired, in-home caregivers. There will be situations when the burdens of care fall on a few while others in their family ignore, avoid, or can’t help with the support.
End-of-life care is demanding, frustrating and requires sacrifice.
My finger reached for the number . . . I hesitated . . . I silently prayed.
Based on those medical records I mentioned, I knew this 50-something child had been alone. No one in the family helped. This child bitterly complained to a social worker that the final moments before death were spent crushing morphine tablets and searching for applesauce instead of holding the parent’s hand. The child complained about the rental bed provided by Medicare benefits. The child had been put on hold by the hospice’s nighttime answering service several times in the last week of life. Why hadn’t there been an “instant” response?
Yes, professionally and personally, I advocate for hospice. As a catchphrase claims, hospice may not add days to a person’s life, but it can add life to a patient and family’s final days. Nonetheless, there are times when hospice disappoints. Blame hospice? Blame a family? Blame the system?
I finished my prayer and made the call.
I anticipated the worst. Accusations. Shouts. Tears.
The fifty-something child didn’t answer . . . and so I left a message. I wasn’t relieved. I didn’t feel like I’d dodged the “bullet” of anger. I knew I’d call again. I knew, because I knew so much (and so little) about the people I once called, that regular contact from hospice after the death was important.
Hospice is far from perfect.
No news there, eh?
Nurses have bad days. Social workers are overly enthusiastic with their promises. Chaplains forget to follow-up on a request. And guys who make bereavement calls—yeah, even and especially me—will say something insensitive.
Informally, I continue to encourage those considering hospice to . . . ask questions (and keep asking), avoid assumptions, listen carefully, openly express fears and hopes, remember that resources are limited. But with all the “failures” and the inevitable “mistakes,” I remain a cheerleader for hospice.
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Photo by David Hahn on Unsplash
My book, A Companion for the Hospice Journey is available at Amazon.
This is so true. Our hospice offeres bereavement calls and ongoing grief counseling. I feel awkward when someone tells me that the hospice experience was terrible. I fight that urge to defend hospice so I can just sit with the family members and share their grief. There have been times, though, when the hospice experience was bad and the bereavement experience, that phone call, made all the difference to the family. Keep up the good work and remember--we're not called to perfection. We're called to compassion.
I applaud your suggestions in your last paragraph! Thanks for your honest sharing Larry!