Of the many hospice statistics that rattle me, 35% nears 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. Since my first awareness of hospice in the late 1980s, the annual stats may fluctuate, but only slightly. About one in three patients die within seven days.
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.
Why? Well . . .
. . . 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. I have a history of drug use (after all, I’ve been taking anti-inflammatory medication for my arthritis for years) that is different than yours. 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 have completed living wills and have documented actions we do or don’t want done in the case of a health crisis, 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.
Hospice doctors and nurses 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.
Everyone is on a relentless rollercoaster.
For 35% or so of hospice patients, there is little time. Everything becomes a sprint to do anything that will benefit an individual’s specific situation. Each moment 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?”
Probably not.
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 a 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%.
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 once involved bereavement? No, I’d say that to anyone, regardless of how I earned 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 rollercoaster jerking to a halt. 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.
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Photo by Jonny Gios on Unsplash
My book, A Companion for the Hospice Journey is available at Amazon.