An admitting nurse from hospice meets with a family in the eldest daughter’s home. He is giving information and answering questions. Three of the four siblings occupy chairs in different parts of the living room. They listen to the nurse while thumbing through hospice pamphlets and glancing at forms that require signatures.
Only a handful of steps away in the “spare bedroom,” the fourth sibling—the youngest brother—sits with their father.
The father is dying.
The bedroom will likely be the final place the father lives after a long life of military service, marriage, career, raising kids, retirement, and burying his wife a few years before. From long-ago conversations, his adult children know that he “can’t stomach those damn hospitals” and will “die on the streets before being dragged into a hospital.” Since he can no longer safely be alone in his apartment, the siblings are honoring his hatred of hospitals by caring for him in the eldest daughter’s home.
One of the kids, a fifty-something community college administrator, clears her throat and says, “We don’t want our father to know you’re from hospice.” She gestures toward the nurse’s nametag, dangling around his neck on a blood red cloth lanyard. “Could you take your nametag off before you see him? And we also don’t want any of your staff to wear their tags.
No one speaks. The muffled sound of snoring is heard from the spare bedroom.
“We’ll tell him you’re a home health nurse providing temporary care,” she finally adds.
The nurse glances at the other two children.
Her eldest sister, the home’s owner, lowers her head and whispers, “We don’t want him to know he’s dying.” She begins to softly weep. “He’ll give up if he does.”
The other sibling, the son who just flew across the country, stares at a wall. He hasn’t yet removed his sunglasses.
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Probably a month doesn’t go by at my hospice’s patient care meetings without a nurse or social worker conveying this request from a family: don’t wear nametags or say you’re from hospice.
With one exception, I suspect all hospices will comply with this request. If a hospice patient is “alert and oriented”—able to participate in decisions about their care—the hospice staff will honestly answer that patient’s questions. If he or she asks a nametag-less chaplain or home health aide if they are from hospice, the answer will be . . . Yes.
Why do families make this request?
- They don’t like to talk about death.
- They fear mentioning death will hasten death.
- They think the patient will give up if told he or she is dying.
Can you think of other reasons?
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With a little extra courage (and nervousness), there are four questions I’d ask a family/individual if they wanted me to remove my hospice nametag.
1) Who is removing the tag truly for?
Are they really trying to “protect” the patient—their loved one—or is this more about a family’s inability to openly communicate with each other?
2) Why is it more important for hospice to lie than for you to be truthful with a loved one?
Every family is dysfunctional. Lies and half-truths and silence are how some families avoid old arguments or a new disagreement. Regardless of past struggles or ongoing rifts among siblings, or among the blended (and sometimes awkward) parts of the modern family, can’t there be an attempt at openness and honesty in the final days of a loved one’s life?
3) What other conversations have you avoided?
Years ago, at a church I served, I asked a group of older parents if they recalled the “honest sex talk” they’d had with their children. Everyone had a memory of that serious (and in some cases embarrassing) experience. Had these parents talked about their own hopes or fears for their dying with their now adult children? Almost no one had that talk! A chat about sex? No problem! But to discuss death . . . way, way too difficult! We do avoid uncomfortable subjects.
4) What does hospice mean to you?
Some families agree to hospice to “get her out of the hospital.” They may be in denial about the terminal illness, or hope there’s miracle cure, or are weary of their loved one complaining about the endless stay in the hospital. Hospice, however, is not viewed as giving comfort care in the final days, but for exiting the current “bad” situation today.
Other families assume hospice does everything for the patient. For whatever reasons—often because they only pay attention to what they want to hear or read—they think hospice provides medical staff and supplies to cover all needs. In a sense, the hospice staff will become 24/7 servants for a difficult time rather than adding support to a family’s care of their dying loved one.
I could suggest other situations that show how hospice is misunderstood or misinterpreted. But all of them would lead to the fourth question: what does hospice mean to you?
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If asked, the hospice staff will remove their nametags. But please remember, they will truthfully answer all questions asked by an “alert and oriented” patient. And finally, a caring and compassionate hospice staff will probably continue to engage you in conversations about taking the tags off versus keeping them on.
Honesty, to the patient’s last breath, and also about a nametag attached near the staff’s hearts, is an essential part of every relationship.
(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.)