A spouse or grandparent nears death, but the family doesn’t want the person to know she or he is dying. And so, a scheme unfolds. Perhaps telltale mail is hidden or discarded. If there are any family conversations about dying or death—or other “bad” words—incomplete sentences become the norm if the “wrong” person enters the room. Friends join the hush-hush efforts, though the more talkative or gossipy ones may be left out of any “information loop.”
Often a doctor that’s concluded there’s no longer the possibility of a cure joins the conspiracy. Whether it’s the inevitable health complications of aging or an opportunistic, grim cancer, the physicians and nurses that were tending to the person’s needs remain silent about the prognosis. (Or at least, silent enough.)
And so, when a hospice admitting nurse knocks on the front door (because the person’s physician has formally requested hospice) and a family member opens the door (he or she has likely been peering through windows, anxiously awaiting the visit), the nurse is first greeted with . . .
“Please don’t wear your nametag.”
Yup, a variation of that line comes before, “Welcome and come inside” or “We’re glad you’re here” or “Hope our home wasn’t too hard to find.”
Why such a conspiracy of silence? The answers are legion, ranging from the reasonable to the ridiculous.
- The family hasn’t yet talked about the life-limiting illness of their loved one. The destructiveness of a disease moves faster than the time it takes for a family to gather.
- Death is a taboo subject because of the family’s faith/culture/traditions.
- In the past, the now new hospice patient ordered his or her family to never say when there would be only weeks or months left to live.
- Someone in the family has agreed to tell the patient everything . . . tomorrow. But tomorrow never comes.
- Death is terrifying, causing verbal paralysis for every family member.
- The patient isn’t a quitter. Hospice means giving-up, declaring defeat, becoming a “loser.”
- Isn’t there always a cure, some new procedure or experimental treatment? Shouldn’t someone do another Google search?
- A recent TV show or movie showed someone just like the patient who made an astounding recovery. See, it happens!
- Have faith. There will be a miracle.
- No one wants to “upset” the dying loved one.
- Bliss is the goal and ignorance the path.
Honoring the family’s wishes, the admitting nurses will communicate instructions to other hospice staff about removing nametags. About not saying they are from hospice. About mentioning—if the patient asks—that the hospice RNs and LVNs come from a home health agency. The social worker has been sent by a physician to help the family complete required forms. The chaplains mutter they are part of a care team paid by Medicare (or insurance or whatever) and merely visiting for a friendly how-ya-doing? chat. The hospice staff frowns or smiles . . . but every health care professional caring for the patient tries to comply.
All of this may happen even when the patient is considered “decisional,” when they can express their feelings, needs, and preferences. The pressure from some or all family members to avoid death when the parent/sibling/child enters hospice can be like a minefield surrounding a loved one. Any family’s long-term dysfunction will rarely be resolved by a hospice team that prioritizes patient comfort. What is more important: seeking to help the patient become pain free or that everyone in the family is in honest, open agreement about end-of-life care? In the ideal world, both can happen. Finding the zip code for a place called ideal is akin to taking a selfie with a unicorn.
And so, nametags are hidden. Words are parsed. Questions are ambiguously answered. Every effort is made to not be the one to make a mistake and speak the truth.
But often enough, truth wins.
A softhearted or hardheaded family member, because their notion of love demands honesty, tells the patient. Or the irritating uncle or grandparent that relishes upsetting everyone (though I’m sure your family doesn’t have anyone like this) spills the beans. For better or for worse, we humans resist keeping our mouths shut.
But I’d guess that most of the time when truth “wins,” it’s not the guilty or gossipy family member informing a patient about their illness and hospice’s role. It won’t be the hospice staff inadvertently sharing the news. Nope, most of the time it’ll be the patient.
The patient mutters the question that can’t be avoided: “Am I dying?”
The patient utters the statement everyone has schemed to avoid: “I am dying.”
I would argue that ignorance is never bliss. Especially when our life, our breathing and chatting and joking and crying and sharing, is limited.
Whether excuses are reasonable or ridiculous, take a risk and let hospice wear nametags.
Name the disease. Name the dis-eases. Name the truth.
(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