In Hospice, Don’t Be Ruled by the Rules

During a patient care team meeting, the hospice medical director explained that he’d broken one of his rules.

My distant impression of the doctor—physically distant because of where he and I sit in the meetings and professionally distant since he cares for the patients in their dying while I support grieving families after death—is that rules are critical values for the way he lives his life.

However, the soft-spoken physician felt he had to break a rule. Instead of providing key information about the disease process, and the options for comfort care so the patient could make choices about the next steps, the doctor bluntly told a patient that he must be transferred from his residence to our in-patient hospice home. Now! There, the patient would have a better level of care for his needs. Moving was not his choice; it was the doctor’s demand.

The patient died before the next sunrise. He died with the sole member of his local family at bedside. For weeks, his dying had been lonely, problematic, and anguished. In his last hours, dying became peaceful. The doctor had used good judgment. But the doctor had also wrestled over “breaking” a personal, essential rule: whenever possible, let a patient take the lead in making an informed decision.

As the hospice team discussed this case, I jokingly—and seriously—told the doctor that sometimes the rule maker has to be the rule breaker. (I think he was glad he’d broken his “rules.” I also suspect he continued to harbor doubts. No life and death decisions, even the ones which feel best or correct, prevent our second-guessing.)

I wish I could break some “rules” that seem hardwired to our culture’s views about dying and grieving.

Even before working for hospice, my time in ministry led me into sterile hospital rooms and cozy kitchens where loved ones frequently lied to each other about death.

Families have told me, “Please don’t tell Dad he’s dying!” Or . . .

  • “We’re not letting Mom know how serious her illness is until we get another opinion.” (And then another, and another . . .)
  • “We’ll wait until tomorrow to discuss hospice with him.”
  • “If we tell her hospice is the only option, then she will give up just like the doctors are giving up.”
  • Or . . .

So many create or continue “rules” to avoid honest conversations about dying, as if an alliance of shared silence will thwart death. It won’t. Swallowing the pill of truth requires that a family opens its mouths.

When I support those who are grieving, we often talk about when they’ll get better: “When will I feel like my old self again?” After all, the time of mourning is unsettling. We eat less or more. We sleep too little or too often. We are tired or wired or some weird combination of both. Smells or sounds or places that remind us of our loved ones slam us against the wall with memories and tears.

There are unspoken rules for “getting over death.”

Many businesses give employees ___ days off to deal with a funeral. Three days? A week? You can use your “sick leave” . . . of course, you may have already exhausted all of your allotted “off” hours. Or you can take a leave of absence, but you better not be gone for long. And then, whenever that third day ends or the next week begins or the clock expires on your leave, get back to work!

Or your irritating second cousin, or the strange guy from high school who’s now a Facebook friend, will tell you it took a month to get over the death of his ninety-year old grandmother and therefore you should be over the death of your spouse in about the same time frame. Don’t others love to give their “expert” opinions?

Don’t be ruled by the rules. Talk about dying and death. Realize that everyone—every single hopeful, hurting person—grieves differently and there’s no timetable.

What other rules are worth breaking so that our dying and grieving can be more life affirming?

(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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  1. I don’t disagree with idea of being flexible with rules. However, I’m not convinced the above is a good example. I think the saddest part of dying is when the person loses control over decision making, particularly regarding the point of whether or not to be at their home or in a home. I think it’s a positive the medical director called this one out.

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