Hospice is Far from Perfect

My finger reached for the first number to press on the phone’s keypad.

I hesitated. I silently prayed.

Since starting at my hospice job in 2012, I’ve averaged maybe fifty weekly bereavement phone calls, which means about 200 families per month. You can do the math . . . I’ve logged considerable phone time over the years! Some calls occur mere days after patients have died. Others are close to the one-year anniversary of the parent or child or spouse’s death. Because of my access to confidential patient information, and talking with the chaplains, social workers and nurses, I know details about a patient’s dying and the family’s reactions. In a few moments at a computer, I’ll read about conflicts between siblings, a spouse’s fears and—if I choose to scrutinize the medical charts—even what happened on the twelfth visit by the home health aide.

Yeah, I know stuff. And so, I hesitated with this call. I knew this 50-something child was disappointed in how we cared for his 80-something parent. Truly disappointed.

[Disclaimer.]

I’m a cheerleader for hospice. I think every overwhelmed family should have access to a medical, psychosocial, and spiritual “team” in the final season of person’s life. When I describe hospice, I happily emphasize 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 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, instead scheduling 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 the family ignore, avoid or can’t help. End-of-life care is demanding, frustrating and requires sacrifice.

My finger reached for the number . . . I hesitated . . . I silently prayed.

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 wearily counting morphine tablets and searching for applesauce instead of holding the parent’s hand. The child hated the rental bed provided by Medicare benefits. The child had been put on hold by the hospice answering service several times in the last week of life . . . why hadn’t there been an “instant” response?

Yes, 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. Frustration. Accusations. Tears. Silence.

The fifty-something child didn’t answer . . . and so I left a message. I wasn’t relieved. I didn’t feel as if I’d dodged the “bullet” of anger. I knew I’d call again. I knew, because I know so much (and so little) about the people I call, that ongoing contact from hospice after the death is important.

Hospice is far from perfect. No news there, eh? After all, every hospice is staffed by humans. Nurses have bad days. Social workers are overly enthusiastic with their promises. Chaplains forget to follow-up on a request. Volunteers miss appointments. And guys who make bereavement calls—yeah, even and especially me—say something insensitive.

I always try to encourage those considering hospice to ask questions (and keep asking), avoid assumptions, listen carefully, openly express fears and hopes, and remember that resources are limited.

But with all the “failures” and the inevitable “mistakes,” I remain a cheerleader for hospice.

My finger reached for the next number (and next person) to press on the phone’s keypad.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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Comments

    • Steven:

      Good to hear from you. In the perfect world, we would be able to follow-up with everyone. And I’ll betcha that some of those social workers were wishing you were the one doing the follow-up with certain folks . . .

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