Intensive Comfort
...to provide comfort to very uncomfortable people, often in very uncomfortable situations...
My first official day as a practicing hospice physician, I am assigned to visit an actively dying patient in their home.
My jaw drops. Throughout my months shadowing Obi Wan, we had never visited a single person who was "actively dying." As surprising as it may seem, the bulk of hospice care is provided to people who are very much alive. The care of people in the process of actively dying is relatively small. Though Obi Wan had been diligent in his didactic teachings of the signs and symptoms of approaching death, the term "actively dying" was not a term I had come across in any of my medical training.
Parking in front of Ms. Gonzales' home, I notice several vehicles filling the driveway and spilling out into the street. My initial thought is someone must be hosting a party. The moment I enter the home, I realize my error. The silence of death approaching is distinct.
Ms. Gonzales' son leads me through the kitchen toward the living room. We pass several people, all of whom have downcast eyes. Ms. Gonzales' son doesn't attempt to introduce me. The only words he speaks to me are, "The hospice nurse just came by. She said CHC would begin as soon as possible."
"Continuous Home Care" (or CHC) is a mandatory heightened level of care that must be made available by all hospice providers whenever a patient develops a symptom that is not readily controlled by routine interventions such as adjusting medications or adding additional supportive presence. This escalation of care results in either a nurse or trained health aid being required to stay at the bedside for hours at a time to support the resolution of the symptom. Whether with direct medication administration or guidance and education for family and caregivers, the CHC staff's job is to provide comfort to very uncomfortable people, often in very uncomfortable situations. One of the most intense is at the very end of life when a person is actively dying and the patient, family and caregivers are experiencing high levels of distress.
Ms. Gonzales is the first person I’ve ever seen in need of this form of care, and I have no idea what to expect.
****
Ms. Gonzales is lying on a hospital bed in the living room. Her teenage grandson is sitting in a heavily worn wooden chair on the far side of the room, knees tucked to his chin with his arms wrapped around his legs. Clear communication that he is not interested in talking.
As I approach his grandmother, I have to forcibly stifle a gasp. She is the color of the palest soot in a fireplace. She looks as if she could just as easily float into the air the way ashes do the morning after a campfire. Her arms are as tiny as a toddler's, with skin that looks as if it will sag to the ground if anyone dares lift her arms off the bed. But it is her face that takes my breath away. Her eyes are open and glassy, almost bulging out of her head like a Chihuahua, except they are grey like her skin and have no apparent focus. And her mouth ... I am not prepared for her mouth. It’s wide open with her lips in the shape of a perfect circle. I have to work hard to keep my own jaw from gaping. My first thought, Is she dead? The only time I had seen an "O sign" was when I pronounced a person dead. I had never seen someone, on their own, actively dying. Without hospital monitors or IV bags dangling above, I am not certain of the meaning of what I am observing. I hadn’t appreciated my developed dependence on technology and its obstruction of instinctual awareness.
My initial assessment detects episodic breathing via a faint rise and fall of her chest which coincides with a guttural noise commonly referred to as the "death rattle." This sound makes it clear it is not yet time to pronounce her. My recent hospice teachings, along with my gut, tell me it won't be long.
Learning to determine prognosis and how to offer this information to the patient and family explicitly if desired, implicitly if not, is essential in order to fully support people at the end of life. Unfortunately, because most doctors today spend so little time at the bedside, this view of approaching death, and in particular of families finding a way to come to terms with a new reality of life in the absence of a loved one, is rarely observed. Instead, doctors minimize their role as the bearer of bad news, thereby missing the opportunity to join patients and families in the sacred and at times tumultuous, terrain of anticipatory grief.
While I am ogling the textbook "O sign", unbeknownst to me, Ms. Gonzales' family is preparing to do battle. Two cousins are en route, both of whom are demanding a reverse course of action in Ms. Gonzales' medical care. I am about to learn the additional meanings of the "O sign", as in "Oh dear" or "Oh no" and "Oh my."
Fortunately, with the arrival of our finest ICC home health aide, Jim, the energy in the home as well as my ability to communicate vastly improves.
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