Hospice Decisions and Right Now

Decisions

When is the right time to ask about hospice?

Isn’t that the hardest of questions? For a potential hospice patient, the “right” or “best” time answer seems like a grim brew of unsettling, intimidating, and unfair choices.

Some would prefer their doctors provide the answer. Though there are exceptions, most physicians have spent scant time in training about “end of life” concerns. The lengthy education for a medical degree doesn’t leave much room in the schedule for learning about the dying and death of patients. Regardless of her or his specialty, doctors are oriented toward healing, cures, and the next best options to try. It’s nearly impossible for many physicians to view hospice as anything other than a defeat. Who wants a doctor that will “give up” on you?

There are likely patients that secretly—or not so secretly—hope a family member will make decisions about hospice. Do you truly want the people who blindly love you, who want you to “live forever,” and who frequently don’t understand the medical situation (with its strange terminology and complex treatments) to make your decisions? It’s nearly impossible for certain family and friends to view hospice as anything other than a personal version of the “end of the world.” In presidential politics, we laugh (and are deadly serious) about which candidate we want at the Oval Office in the awful event of national or global catastrophe. Who, in any family, wants to trigger the “apocalypse” for a loved one?

But I can give some an answer. I will make it easy for a few of you pondering hospice as an option for your, or a loved one’s, care. If you are reading this, isn’t it now time to consider hospice? Except for several hospice colleagues that are curious about my ideas, or a couple of friends who like to read my adjectives and adverbs, why spend much time at a website entitled Hospice Matters . . .

Unless you are ready for hospice information, for learning more about dying, death, and grief?

Right now, go to the National Hospice and Palliative Care Organization (NHPCO) website on the “find a hospice” page (click here), enter your zip code in the box labeled “search here,” and then press the return or enter key on your computer. Several nearby hospices will pop up. Now, without too much trouble, you have a reputable hospice’s phone number and email address.

You can contact them, and schedule a visit. Someone will soon arrive who has key information and can respond to your questions. It’s possible this person will be a hospice RN. If any of your questions aren’t answered, that agency’s representative will follow-up with more information later.

You won’t be charged even a dime for an evaluation. (Want me to repeat the “free” part?)

After they have shared, maybe you will say: “Thanks, but no thanks. It’s clear we’re not ready.”

And the hospice professional will say, before returning to his or her car: “You are welcome. It was a true pleasure to help you with information.”

Again, you won’t get a bill. Details were provided. Most questions were addressed. (And if the hospice representative wasn’t polite, or made you feel uneasy, you may want to go with a different hospice if you were truly ready for “care” over “cure.”)

Wasn’t that a breeze? I’m sure you’ll want to send me an email with a brief note of gratitude.

I’m joking (about the email).

But I’m not joking about any of your scary, real, serious, possible decisions. For most people in most zip codes, it is easy to schedule an appointment with a local hospice when seeking answers.

Nonetheless, as much as facts and figures (and even answers) from a professional are helpful, the more important conversations are the questions asked with your loved ones, at every stage of life.

  • What does quality of life mean to you? Right now.
  • Who do you want (need) to spend time with? Right now.
  • Are you able to balance comfort/rest with challenge/activity? Right now.
  • What is your #1 question that only you can ask? Yeah, right now.

I hope that people would spend time talking about a variation of these “essential questions” when getting married, having children, considering career changes, or moving to a new community. I’d hope conversations happen with loved ones as retirement approaches. I’d hope than when a family member or dear friend faces a difficult illness, that their situation prompts you to think about what you’d do in a similar circumstance. Back in the 1990s, when my wife and I contemplated a move from Oregon because of the relentless stress from a job she also loved, we had a very, very, very long walk on a beach. We spent hours discussing “quality of life.” It wasn’t about death, it was about life. And while hospice is about death, it’s even more about life. Your life.

I’d hope if (when) you face a serious life-limiting illness, that some of the earliest conversations with the doctors include hospice care. Not because the treatments for the disease will fail, and not because you’re a cranky pessimist, but more because you want to start and continue a dialog that remains open to the good, reasonable, and possible options.

As I wrote near the start, many doctors are uncomfortable with hospice. And if you’re resistant to options and choices, it’s likely that attitude will make the doctor more resistant to openly sharing “scary” details with you. It’s the same with your loved ones. If your loved ones think it’s “bad mojo” to mention death or they are uneasy with the subject, many avoid anything related to dying.

Nobody wants to talk about it. So, it might as well be you that takes the initiative.

What about . . . right now?

(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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