Of the many hospice statistics that rattle me, 35% is near the top of the list.
Nationally, in all hospices, about 35% of the patients will be served for a week or less. In some cases, much less than a week.
These patients often arrive from a hospital setting, with the family desiring the parent or spouse to die at home. They are frequently cancer patients, and their chemo or radiation treatments were concluded a handful of days before admission. They are old and young. They are male and female. They are alert and comatose.
Many are in pain.
Though I am not a medical person, I know enough about how medication works to understand that getting a person’s pain under control is never easy or automatic. You see . . .
. . . I weigh more or less than you. I tolerate certain drugs that would throw you for the proverbial loop. I have allergies that you don’t have. And what if I lie about my allergies? What if you do? I use medications (I’ve taken an anti-inflammatory prescription for my arthritis for years) that might not interact well with some hospice meds. I don’t abuse alcohol or other recreational drugs, but what if you have? My religious convictions don’t prevent me from taking certain drugs, but what if your beliefs do? My wife and I completed living wills that include what we do or don’t want done for end-of-life decisions, but what if no one in your family knows what you really want when faced with a terminal illness? What if members of your family—say your stubborn son and your hides-her-feelings daughter—disagree about the hospice values of comfort over cure, or about going home versus going to a care facility?
But mostly, a patient (and family) wants to have the pain decreased, controlled, gone.
A hospice nurse will do his or her best to reduce your pain, but that takes time.
A hospice social worker will do his or her best to guide your family into the best decisions to support you, but that takes time.
For 35% of patients, there is little time. Everything becomes a sprint to do anything that will benefit an individual’s specific situation. Each moment in hospice feels like a demolition derby where every car loses. Each decision feels forced or futile. Minor disagreements—between family members or between a family member and the hospice staff—can escalate into angry reactions.
But can’t this be avoided? Isn’t there some way for clearer minds to prevail, for hearts—and time—to slow down, for the right words or prayers to be said, and for the shocked family, the anguished patient, and the scrambling hospice staff to all be “on the same page?”
We cling to life. We want one last shot at a cure. We are holding on for a child or parent or sibling to arrive before we die. We are told a particular operation has at most 1 in 10,000 success rate, but we grasp at being that one percent of one percent with a new lease on life. We dither with decisions because we have always procrastinated. We put off the best (or least worst) choice because we want “everyone” included in the decision-making process. We are . . . human.
There are a thousand reasons—smart reasons, fearful reasons, conflicted reasons, and desperate reasons—that cause someone to be among the 35%. I suspect it’s a troubling number that will continue to appear on the national hospice statistics.
But hospice care doesn’t end with death. If your loved one died in hospice within a week, please consider taking advantage of that hospice’s bereavement support. Do I suggest that because my job in hospice involves bereavement? No, I’d say that to anyone, regardless of how I earn my money, and regardless of whether your beloved was among the 35% or the 65%. Nearly everyone can benefit from spending time with a grief counselor. Nearly everyone can benefit from workshops that provide insights about grief. Nearly everyone can benefit from a support group where fellow participants have experienced similar dramas and traumas.
But especially for the families of the 35%, the time after a death can suddenly slow down, like a roller coaster jerking to a halt or a car running out of gas. For all of the prior good and bad reasons for the rapid death, where a patient’s pain control and a family feeling out-of-control dominated each anguished day, take the next weeks and months and more to be a part of support.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by