Journalist and longtime hospice volunteer Judy Bachrach has another column for us in her signature, no-nonsense style. Got a question about dealing with dying, or what to do and not to do with the terminally ill? Visit her site The Checkout Line and click "Ask Judy."
FIVE HOSPICE MYTHS
Every time I tell people I volunteer at a hospice, the reaction is the same. Isn't it awfully depressing for you?
The answer is no - I'm not, after all, the person who's actually dying. If I were the person dying then, yes, probably I would be pretty unhappy about the situation, although not necessarily depressed. Hospice care can treat depression extremely effectively - in fact, since no one seems capable just yet of curing death, that's a lot of what hospices do: alleviating the many unpleasant side-effects of dying.
hich brings me to the subject of the day: which is hospice myths. There are a whole lot of them going around, but we'll begin today with the Top Five, the most popular of which is
1) Hospices Are Places Where People Go To Die
Actually, although about a third of all those who die annually are under hospice care, very few of them were in an actual hospice in-patient building when that final act took place. Most died at home, where they were under the care of hospice-trained nurses, doctors, volunteers and social workers. There's a reason for this reluctance to dislodge patients to an in-patient unit, and it isn't only the heightened cost of such transfers (although cost is, and continues to remain, a big issue).
At home a patient may be surrounded by family and friends. Meds can be administered and titrated; favorite foods prepared and offered at times convenient for the patient; and rest is much easier to come by.
2) Hospice In-Patient Units are Uniformly Depressing
Back in the Eighties, when hospices were relatively new in the United States, this was undoubtedly the case. I still have vivid recollections of ratty metallic-grey desks stacked four to an office, overheated radiators, indifferent food, and halls that smelled of Mr. Clean.
Today, however, most hospices look like the kind of hospitals you see only in soap operas: in the lounge, flat screen TVs are haloed by couches upholstered in unobjectionable beige wool; nurses actually come when called, and ply patients experiencing pain with excellent narcotics (and no one worries overmuch about addiction); doctors do not address those they care for by their first names; and breakfast trays are piled high with real scrambled eggs, bacon and homemade biscuits.
What can I say? If you didn't know what you were there for, you might actually enjoy the place.
3) If You're Dying Anyway, Why Subject Yourself to Another Bureaucracy?
The nicest thing about hospices, aside from the breakfasts, is that a lot of life's tedious rules are suspended. At the Community Hospice of Washington, where I happen to volunteer, there's a special garden where smokers are brought (yes, even lung-cancer patients) whenever the urge to light up may strike them. Also on the welcome list: bottles of booze (as long as a doctor signs off on the deal), the occasional well-trained pet (properly vaccinated) and visitors -- 24 hours a day.
4) Once You Sign Up for Hospice Care, You Give Up On Life
Interestingly, the opposite is true. Hospice-care patients tend to outlive a doctor's prognosis. Less time and effort is spent administering extreme measures, which may be painful or induce nausea and weakness. The emphasis is on comfort and care.
Yes, all right, you are still dying (as who among us, in a more attenuated sense, is not?). But palliative care, properly administered, tends to reinforce the desire to live.
5) Hospice Personnel Are Living Saints
Heh-heh. Just the other day, I was rebuked by some sour-faced pickle because I had screwed up when I tried to transfer a call (the hospice phone system isn't my best friend). After that, a nurse bit off my head because I had the temerity to tell her, "The patient in Room 104 is in pain." (In hospice parlance, what you are supposed to say is: "The patient in Room 104 reports pain." Or "...seems to be in pain." Why this should be the case, I have no idea. It's idiotic. Our patients are dying. Not delusional).
All of which is to say - no, hospices aren't perfect. Hospice personnel aren't saintly. But they're a damn sight more wonderful than almost anyone else in the field of medicine. And it's a real honor to be with them.