How can a hospice staff—whether home health aids, chaplains, or nurses—explain who they are and what they are doing when a patient’s family instructs them not to mention the word, “Hospice?”
In our patient care meetings, especially with newly admitted hospice patients, a month doesn’t go by without mentioning one or both of these questions.
Since hospice involves caring for the dying and supporting the bereaved after death, sometimes the staff can’t talk about their real work with the people they serve.
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What word do you use for death?
- Is a person lost?
- Have they transitioned?
- Are they gone?
- Did they pass?
- Is your loved one in a better place, standing at heaven’s gate, meeting Saint Peter, or with the angels?
Since the beginnings of my ministry, I have used dying, death, and died. I suspect, over the years, in person and on the phone, I have upset people with those unadorned words.
For some, death is too blunt. It is like being smacked on the head with a sledgehammer. The finality of the word, the reality of what it represents, is too hard to hear and too hard to bear. If the word is not spoken, then perhaps it’s not yet really true?
For some, death is culturally insensitive. Certain cultures and ethnic groups never want to discuss dying—in whatever form it might be referenced—prior to the death. They will do little or no planning for death, and will avoid—often politely, but also with displeasure—any encouragement to talk about dying with them or the loved one who is ill.
For some, death should be avoided at all costs. Superstition may be involved, since mentioning death literally invites the “worst” into the room with you. If you don’t talk about a bad thing, maybe the bad thing will go away until another day.
For others, contemplating any facet of death signals giving up. Life is all that matters. Life is a battle to win. Death is admitting defeat. And so all conversations or decisions involving the patient should be focused on life. All choices should involve getting better, stronger, and healthier.
I continue to prefer dying, death, and died and probably upset people.
What do you say?
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Scene: a pleasant kitchen in a suburban home.
Those present in the kitchen: 1) a hospice admitting nurse, wearing blue scrubs with a stethoscope dangling from a front pocket and 2) the middle-aged son and daughter of a father who is a new hospice patient. It is the daughter’s home.
Those not present in the kitchen: the father. He is dozing in a hospital bed in the middle of the daughter’s living room. The door between the kitchen and living room is shut.
The admitting nurse briefly explains the role of hospice, provides an overview of the various hospice staff that will be supporting the family, asks the son and daughter to sign a few key forms, and also places a packet of information on the table.
The eighty-something father has stage 4 cancer. Physicians have guessed he has weeks, perhaps a few months, left before he dies. Just last summer, he was living independently in a retirement village. Back then, he enjoyed three meals a day, walked a couple of miles in the mornings and late afternoons, complained about the stupid government and their lack of support for Social Security benefit increases, and—until the final lousy days of the season—was convinced that his beloved St. Louis Cardinals would get to the World Series.
Now he can’t get out of bed without help. Now he sips water and only nibbles at food. But he is, as hospice nurses often say, “Alert and oriented.” He knows who he is and where he is. He knows what year it is. He knows—though he mutters angry things about him—the name of the current President. Except when trying to sleep at night, he always wears his tattered Cardinals cap.
“Please,” the son says when the admitting nurse asks if there are any questions, “Don’t tell Dad that you are from hospice.”
The daughter nods and adds, “We want your staff to remove their nametags when they visit.”
If you were the admitting nurse, what would you say to the son and daughter?
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When I was a hospice chaplain and visited patients in their homes, I tried to learn about the family and patient’s needs.
I would always begin with the words, dying, death, and died. But if I discovered that these words unsettled the family and/or patient, I would adapt my language to theirs.
In my current work, as I make bereavement calls to families grieving the death of a loved one, I use dying, death, and died when speaking to them. A phone “chat” has obvious limits: it’s usually brief and I can never see anyone’s reaction to words. But in a few phone calls, it’s obvious I’ve made someone uneasy and so I shift toward “safer” language.
In the grief support groups I lead, I always say dying, death, and died. I am stubborn. I know it will upset some. Many group members have used passed or gone or in a better place . . . and that’s fine with me. But as much as I seek to be sensitive to each person in the group, I also want them to hear me speak words that focus on what everyone is struggling with: a beloved’s death.
When parents ask how to explain death to children, I encourage simplicity. Because children take things more literally, I’d rather parents use “death” over “being gone” or that “God has taken them to heaven.” Why would someone be gone from home when a kid’s been told that it’s good to stay home? Why would God take someone away that the child prefers to have here and now? Keep it simple. Avoid metaphors. Don’t be confusing. Don’t answer questions a child doesn’t ask. (Which I think is also good advice for adults.)
But, even when I disagree with a family’s preference to avoid saying “hospice” or with the words used instead of death, I (and I hope most hospice staff) will honor the request.
Given the chance—because words matter, and what we think matters, and how we talk with each other matters—I will always try to ask people about their choices.
Death is a hard, scary, intimidating subject.
What words do you use?
(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.)by