In Extremis definition: at the point of death, at death’s door, breathing one’s last, not long for this world.
When I launched this series in January, I said I wanted to notice “simple, modest, authentic examples of respect among people I interact with daily.” Here’s what I have been noticing.
I stand outside the closed door, leaning against the opposite wall, halfway down the corridor in a skilled nursing facility. Soft light, quiet female voices, and the occasional deep moan escape into the darkened hallway from behind the door. It is midnight; a passing nurse pauses before me and raises a questioning eyebrow.
“I’m a hospice volunteer waiting to sit with, uh, keep vigil with Mr. X.”
“They’re changing him, giving him his meds, and making him more comfortable.”
I nod. “I’ll wait here ’til they’re finished.” Nurses handling one’s naked body, even at the point of death when we imagine inhibitions have dissolved, is one thing. Having one’s wasted body exposed to a perfect stranger, whether or not you are aware of her presence, is another. I assume modesty does not dissolve at the end of life and do not intrude until Mr. X is dry, clean, settled, and covered up to his chest with a light sheet and warm cotton blanket.
When I step into the room, the remaining nurse gently touches the unconscious man’s shoulder.
“Does that feel better, Sir? I will give you a little more medicine to help you breathe more easily. I’ll just put a couple of drops inside your cheek. That’s it.” She positions the dropper inside his gaping mouth and slowly rubs his throat below his jaw. “Good, now swallow if you can.” He does.
Before leaving the room, she fills me in on what she knows about her dying patient—his former profession, family members who kept vigil earlier, and his interests. Then, she points to various objects in the room—the essential things his wife wants him to have near at the end: Classical CDs, a small CD player, a book of poetry, and photos. “I’ll be back to check on you in an hour, Sir,” she whispers close to his ear before gliding through the half-closed door.
The room is dark, the dim light from the adjoining lavatory casting shadows around the bed. I put some Bach in the player, turn the volume low, place a straight-backed chair next to the bed, collect the book of poetry, and sit. I touch Sir’s lower arm through the sheet and introduce myself, giving my first name and saying I will be sitting with him for a few hours. His breathing does not change as I touch him or speak. He is deep in and far along on the journey to the end of his physical life. I quietly read poem after poem, pause for a few minutes of silence between them, and watch Sir breathe. Soon his breath becomes ragged and uneven; it occasionally stops for up to thirty seconds and then begins again, shallow and irregular.
Over the next few hours, the kind nurse comes and goes several times, always speaking softly and respectfully to Sir, touching him gently, and telling him in advance about every act of care she will perform. No callousness, no surprises, no assuming he is no longer entirely there. I watch her ministrations with awe, a tear coming to the corner of my eye at witnessing such tenderness.
My friend is slumped in her hospital bed, several floors up in a massive building on Boston’s Beth Israel Deaconess campus. She is declining rapidly. The plan is to release her home to hospice care the following day. Today, she shares a room with a mystery woman behind a drawn curtain. During my less than an hour stay, nurses come and go from the room every few minutes.
My friend is on a breathing machine called a BIPAP, a form of non-invasive ventilation therapy. She can watch its monitor, see the oxygen level in her bloodstream, turn it off when it reaches the desired level, and remove the oxygen mask from her face. But a nurse must come to turn it back on again and reposition the mask to seal it around her mouth and nose. This procedure happens four or five times while I am there. The nurse’s calm composure, concerned smile, and respectful tone astonish me.
The patient behind the curtain is worried that she has not received the proper dosage of her medication. Another nurse repeatedly and patiently explains the doctor’s orders, the times she was medicated, and when she is next due. Finally, after about 20 minutes, the patient thanks her and apologizes for being such a nuisance. The nurse responds, “Not at all; this is important. You should always question us if you feel something is amiss.”
While the BIPAP breathes for my friend, she closes her eyes and rests. She removes the mask when she can breathe on her own, and we talk about her difficult life, sadness, fear of pain, and death. She praises her husband for the care he has given her over the last several years. We say we love each other and are grateful for our friendship. We hold hands in silence. When her eyes are closed, I gaze at her—the whole picture of her crumpled body amid bunched-up sheets, her swollen hands, and her weary face. I think, someday, this will be me.
The nurse returns and gently repositions my friend’s oxygen mask, punches buttons, and the BIPAP whirrs again. Then this guardian of my friend’s humanity glides back into the hallway and on to answer the next call bell—respect in motion.
For those who die after a long decline in health, the dissolution of respectableness can be one of the most challenging aspects of the journey. Gradually we lose many of the attributes that once earned us respect, approval, and acceptance. As the looks wither, the brain slows and dims, and control of bodily functions dissolves, power over external forces diminishes. We are no longer the sisters, mothers, professionals, neighbors, philanthropists, or activists we once were; no longer the persons others, and we ourselves, considered worthy of respect. In extremis, we will rely on pure, unearned, free respect. Will it be offered? Can we give it now, in anticipation?