Death Sneers at Schedules

RumiA long time ago, friends asked my wife and me for support during the birth of their child. Such a privilege! We set aside a day for the wondrous event. Everyone was ready: parents, nurses, doctors, and yours truly. But the baby hadn’t gotten the memo. Hours went by. Labor continued. A sunset eventually became a sunrise. Labor lurched into a second day.

Though we may think birth is predictable, it’s not. You’ll ask the friendly obstetrician for the birth date and she’ll provide a day or range of days. The expectant parents mark it on the calendar. They are ready with answers for the inevitable question: hey, when is your baby due?

Except that labor can sometimes seem to lead to birth in less time than it takes to read this sentence.

Except it can also feel like giving birth lasts longer than the winter snow melting in Wisconsin.

I’ll bet you have stories from family and friends about the special day parents planned for versus the chaotic day that ignored all plans. The child comes early; the child comes late. As sophisticated as we 21st century-types are, I still hear about births that surprised everyone (including that highly-trained doctor) when twins “popped out.” Several years ago, after routine ultrasounds, one of our nieces was warned her baby would be BIG. Perhaps ten pounds! Or, gasp, more? Tests proved it! Her delightful, perfect child proved to be of average weight. No records were set, no hospital scales were damaged. I wonder if the doctor apologized for the “big” concerns?

Death, like birth, is unpredictable.

But that’s not fair! Aren’t our schedules overloaded with work and more work? Our well-deserved (but too brief) vacations take effort to plan. We have dental appointments, kids’ soccer games, grocery shopping, and a slew of other obligations. We require ample time to handle any new event.

Except babies don’t care about well-managed or messy calendars.

Except the dying couldn’t care less about well-organized or incoherent calendars.

Nonetheless, we ask, we plead, we demand . . .

How long do I have to live, Doctor? Do I have years, months, weeks, or days?

How long does my loved one have to live? Will it take years, months, weeks, or days?

We need information right now! We want clarity right now!

*          *          *

Not long after Dr. Cicely Saunders established the first modern hospice in London (St. Christopher Hospice in 1967), the phrase “six months or less to live” became the benchmark for the hospice timetable. Are you appropriate for hospice care? Do you have a life-limiting illness that means—based on two physicians’ agreement—there are about six months to live?

Six months?

According to data from the National Hospice and Palliative Care Organization (NHPCO), the “average length of service (ALOS) for Medicare patients enrolled in hospice in 2017 was 76.1 days. The median length of service (MLOS) was 24 days.” The median length means that half of 2017’s hospice patients were served by a hospice for 24 days or longer.

Which also means 50% of all patients were in hospice care for less than 24 days.

Each year, the statistics may give slightly different results, but a stay of six months in hospice is somewhat rare. In the last decade, as I’ve paid attention to the annual numbers, there are typically around 30% who die during their first and only week of hospice care. If we think hospice care will last for six months, but are then confronted by a singular week, it will resemble travel on a bullet train. Patients and their families depart the station called Normal, arriving at Chaos a heartbeat later. Dying is a trickster, liar, and cheat. Death sneers at schedules.

  • What happens when a patient is informed that he or she has months to live, but then takes a final breath on the very next day? No one can truly prepare for death, but death has a way of stealing even the illusion of preparation.
  • What happens when far-flung family gathers to say goodbye, but their dying parent keeps waking up the next day? And the next day? The sad family reunion can evolve into a grumbling group of siblings staring at clocks and counting their beloved parent’s breaths.

How can dying occur so fast? How can dying take forever?

Rumi, the 14th century Sufi mystic and poet (from the Islamic tradition) is said to have written, “Yesterday I was clever. I wanted to change the world. Today I am wise. So, I am changing myself.” As family and friends and caregivers, can we change ourselves when supporting the dying loved one? One change will be a certainty. One change will involve our precious schedules. All changes cause weariness, but might also inspire Rumi’s hoped-for wisdom.

I wish I could prepare you for everything and answer all questions. While it’s easy to state that every moment matters, our journey with the dying will anger, bless, confuse, depress, enlighten, frustrate, and transform us. Some moments will feel the worst, and those “worst” times can occur in same hour or day as the best.

I think Rumi expressed a tender, tough truth: when caring for the dying, you can’t change the world, but you can change yourself. Will we abandon the clock and the calendar and measure time with compassion? I hope so. Though difficult, I believe it’s possible.

(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.)

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