Of the many hospice statistics that rattle me, 28% is near the top of the list.
According to 2016 statistics, 27.9% of all hospice patients will be served for a week or less. In some cases, much less than a week. Death will come in a couple of days. Or a few hours.
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. What if I was the patient, or what if it was you entering into hospice care? 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.
- 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 do or did?
Additionally, my religious convictions don’t prevent me from taking certain drugs, but what about your beliefs? 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 loving or not-so-loving family—say your stubborn son and angry 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’s social worker or chaplain will do their best to guide your family into the best decisions to support you, but that takes time.
For 28% of hospice patients in 2016, there was little time. Everything became a sprint to do anything that will benefit an individual’s specific situation. Each moment felt like a demolition derby where every car loses. Too many decisions seemed forced or futile. Minor disagreements—between family members or between a family member and the hospice staff—could have escalated 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 a 1 in 1,000 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 delay making choices because we want “everyone” included in the decision-making process. We are . . . human.
There are countless reasons—smart reasons, fearful reasons, conflicted reasons, and panicked reasons—that cause someone to be among the 28%. 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 28% or the 72%. 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 28%, 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, bad and often unknown reasons for the rapid death, where a patient’s pain control and a family feeling out-of-control dominated each anguished day, please consider taking the next weeks and months and more to seek support.
Whatever percentage you are part of, don’t be alone with any doubts, regrets, or second-guessing that a short stay in hospice can cause.
*In whatever is the most current year and current hospice statistic, this number will obviously change. The 27.9% (which I rounded to 28%) is from a 2017 report that was updated in 2018. Maybe in a next year the statistics will skew higher or lower. But whether it’s 20% or 40%, there are always many patients with hospice for mere days. Oh, how I wish it were not so . . .by