On the Hospice Rollercoaster

Early in my practice, a wise physician in his mid-nineties who was also my client said to me, “when I can no longer feed myself, please do not let people feed me.” He also put in a letter to those providing his care that, in the event of pneumonia, he did not want to be given antibiotics. “Pneumonia is the old man’s friend,” he told me and because he had ended his career as the medical director of a nursing home up north, it carried significant weight.

In the last year, I have walked beside more families than I have fingers and toes, as they declined—some at home, some in Assisted Living or Skilled Nursing—under the care of hospice. If I had to visually convey what the experience is like for both the patient and the family, I would trace the shape of Thunder Road, the largest roller coaster at Carowinds when I was a kid.

There are often sheer drops, panicked calls—because few have accompanied a loved one on this journey— and then genuine surprise when a loved one rebounds. This journey, for many, is a jagged line.

“He hadn’t eaten for four days, and then ate a pint of ice cream,” one client told me by phone.

In addition to the ups and downs, under such stress, there are often challenging family dynamics (even in the most stable of families)—one sibling who lives at a distance and wants to do everything to extend mom or dad’s life and another who sits by the hospital bed of their parent, fully aware that there is little quality in that life, and often instead, increasing suffering.

When a parent has advanced dementia and cannot speak for themselves, this makes daily decisions all the more fraught.

• Do we give antibiotics for Mom’s urinary tract infection or pneumonia?
• Do we keep hand feeding Dad pureed food even though he often turns his head away?

There are no easy or unequivocally correct answers. And while few bring up another crucial part of the equation—the effects that prolonging a life has on the spouse, the children and extended family--this must also be weighed.

This is the territory that a skilled and seasoned hospice team can help a family navigate. There are some especially good books, too, such as Katy Butler's The Art of Dying Well: A Practical Guide to the End of Life.

What does one do? How does one stop reacting to each new bit of news and respond wisely? A seasoned physician once said to me, “In the event that you must make a critical decision, keep at the forefront what you think your loved one would want. Sometimes that, more than anything else, can clarify the situation.”