With as prevalent as hospice has become, many people still don’t know what it is. It is not a place; it is not round-the-clock nursing services; and especially it is not a way of hastening the end for people with incurable diseases.
In my experience, hospice is a type of expanded nursing service, providing support — medical, emotional, and practical — for patients and their families admitted to the service. (This may or may not be the mission of hospice — it is merely my impression and how I have used the services offered.) Although a large percentage of people on hospice are cancer patients who have less than six months to live, many people are on the service for several years — since hospice is about palliative care rather than curative treatment, many people suffering from incurable diseases are admitted to the service.
Hospice does not provide drugs intended to cure, but they provide medications to help make people comfortable, such as breathing treatments, diuretics, morphine for pain and breathing difficulties. (This drug service pleases me — it saves me the aggravation of having to deal with my father’s drug provider, especially when it comes to the breathing treatment. It’s expensive and they won’t pay for it, so they have to go through Medicare, which takes months. With hospice, I’ll get it within a week.)
Hospice is especially good for those who want to die at home, who have no ability or energy to visit their doctors at their offices, or who don’t want to have to deal with hospitals any more. (Often the “curative” care given in a hospital is taxing to a person on the edge of life, particularly when the doctors are trying to treat an untreatable disease, and in many cases, the patients are worse off when they leave than when they entered.) With hospice, patients still are technically under the auspices of a doctor, though most visits are from nurses and health aids. Other services are available with hospice, such as social worker and chaplain, in case either the patient or the family needs to talk. And there is respite care, generally a five-day stay in a hospice care center for the patient, to give the family member who is a caregiver a respite. (Jeff, my life mate/soul mate was admitted to a hospice care center for five days to give me a chance to catch up on my sleep. I didn’t sleep much at all while he was there, so it was a bit of a waste. Even worse, he never came home. He died on the fifth day.)
I am now going through my third experience with hospice, this time with my father. (My mother was first, Jeff second.) Oddly, I am in the strange position of having to reel in the juggernaut of hospice. They are geared up for the end, calling in a priest for an emergency visitation for my father, setting up all sorts of unnecessary services such as multiple visits from nurses (though there is nothing for them to do), offering me counseling services, sending cases of Ensure he will not drink. (Actually, he will drink it, but I won’t let him. He drinks the Ensure Plus, which offers more calories than the regular, and since Ensure is about his only source of nutrition and calories, and since he doesn’t want to drink six regular Ensure a day instead of the four Ensure Plus, I’m still buying the Plus to make sure he doesn’t starve.)
The reason we’re getting too many services too soon might be in the paperwork — in the submission papers, my father’s doctor said he had prostate cancer and had six months to live. Apparently his congestive heart failure and chronic obstructive pulmonary disease aren’t killing my father, but the truth is, neither is his prostate cancer. He’s had it for many years, and the urologist laughed it off, saying to come back when my father’s PSA readings are in the thousands instead of in the teens.
Still, my father has lost a lot of weight (that dang hospital stay!), so he’s a good candidate for hospice. It’s a comfort knowing that hospice is there if I need them. It gives me someone to call in an emergency. Gives my father the sense that someone in authority (rather than just me) is trying to get him to keep up his breathing treatments and to eat a bit. Gives him an alternative to going to the hospital.
25% percent of people admitted to hospice care die within the first four days for the simple reason that doctors themselves aren’t familiar enough with hospice to understand the service and so wait until the patients are too debilitated from “treatment” to benefit from hospice. On the other hand, more than a third of people admitted to hospice live long beyond the date of their expected demise because palliative care emphasizes the quality of whatever life is left.
Quality of life is always a worthwhile goal, even when — especially when — a person is at the end of their time.
Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebook.