A Guide To The Hospice Experience

Due to my recent experience sharing a room at a Manhattan hospice with an ill family member for four consecutive weeks, I had a unique 24-hours-a-day view of its activities. Although I am not naming it, my observations offer important insights to those seeking an insider’s view of a hospice’s operation. Hospices are like hospitals, but feature care that focuses mainly on keeping each patient comfortable, such as providing medication to relieve pain. Some of those admitted have terminal illnesses, but others may stay only a few days before going home.

Hospices can be a mixed bag when it comes to caring for an ill family member.

Hospices can be a mixed bag when it comes to caring for an ill family member.

From the beginning, my presence in the room (I slept in a reclining chair) turned out to be about far more than providing morale. I found myself attending to almost all the patient’s wants, such as opening and closing the window curtain, adjusting the bedside table for meals and, usually, raising and lowering the bed (using a button) because the nurses, nurses’ aides and volunteers were so often occupied with patients’ needs. The morning routine began every day at 5:30 a.m., when a staff member entered the room, abruptly snapping on all the lights, to administer medication, followed shortly by another, who also flooded the room with light in order to take the patient’s blood pressure and temperature. When a midnight request for an extra blanket also resulted in a similar bombardment, I asked the nurses’ aide why this simple action necessitated such a disturbing attack on a patient’s vital need for sleep, and was told “I’m only following orders.” I strongly suggest packing an eyeshade for every hospice patient who wishes to sleep with as little disturbance as possible.

Another night, a request for more warmth for the patient inspired an aide to completely cover the room’s one air vent. When the patient promptly protested the unwelcome increase in stuffiness (and I immediately removed the covering) the aide insisted, “When I did this in another room, it made it a lot warmer! And there was plenty of air from the cracks around the windows!” Numerous mornings at 6 or 7 a.m., the night staff hobnobbed in the hallway outside the room, enjoying enthusiastic conversations, completely oblivious to their sleep-shredding quality, so I suggest adding earplugs to the patient’s baggage as well.

For the first few days, fortunately, the double room remained private. Unfortunately, the first roommate to arrive had a huge family who talked loudly hour after hour, day after day, competing with the noise of the television that they kept on every moment of the patient’s five-day stay. Polite requests to the staff to reduce the decibel level in the other half of the room inspired little effect, other than the unhelpful comment from a staff member, “A lot of people here keep their televisions on all the time”.

Following several complaints about the continuous unannounced entrances of staff members, staff members began (sometimes) knocking on the usually-opened door, saying “Knock knock!” or “Can I come in?”

The rare pleasures of the hospice included regular visits from a singer/musician, and one  visit from a friendly “therapy dog.” Two potentially dangerous situations that were averted included the night I noticed that a visitor had draped a shirt over a lamp before any staff member saw it, and the occasion when the patient realized that a nurse was about to put a patch on his arm that would have resulted in an overdose (Her excuse:”I have trouble remembering what day it is, the day after I have a day off”). Early one morning, someone who had just taken the patient’s blood pressure began to wheel out the machine for recording results without realizing that she’d left the cuff attached to the patient’s arm. “Sorry, I’m almost asleep”, she said.

In general, the staff really worked at maintaining a caring atmosphere. The nurses patiently spent long hours educating families about their loved one’s diagnoses, while social workers provided patients and visiting family members with invaluable help and solace, and volunteers offered welcome warmth and assistance with errands. One wise insight extended by a nurse to grieving relatives: “Grief is the tax we pay on love”.

-Edmond Dantes