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 and unfair choices.
Some would prefer their doctors provide the answer. Though there are exceptions, most doctors 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. Doctors, regardless of her or his specialty, are oriented toward healings, hopes, cures, and the next best option to try. It’s nearly impossible for physicians to view hospice as anything other than “giving up.” Who wants a doctor that will “give up” on you?
There are patients that secretly—or not so secretly—want a family member to 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 many family and friends to view hospice as anything other than a personal version of the “end of the world.” In presidential politics, we laugh about (and are deadly serious about) which candidate we want in the Oval Office in the awful event of nuclear war. Who, in any family, wants to trigger the “apocalypse” for a loved one?
But I will give you an answer.
I will make it easy-peasy as you consider hospice as an option for your, or a loved one’s, care.
If you are reading this, it’s time to enter hospice. Except for a few hospice colleagues who are curious about my ideas, or a couple of friends who like to read my adjectives and adverbs, why spend any time at a website entitled “Hospice Matters” . . . unless you are ready for hospice?
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 hospices will pop up that are nearby. Now, without too much trouble, you have a reputable hospice’s phone number and email address.
Schedule time with them.
You won’t be charged even a dime for an evaluation. After their visit, maybe you’ll say, “Thanks, but no thanks,” and they’ll say, before heading for their car, “You are welcome. It was a true pleasure to help you with information.”
Again, you won’t get a bill. Information was given. Information was received. (And if the hospice representative wasn’t polite, or made you feel uncomfortable, you’d probably want to go with a different hospice if you were truly ready for “care” over “cure.”)
See . . . 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 information (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 these “essential questions” when getting married, having children, considering career changes, or are moving to a new area. 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 immense soul-crushing pressure from a job that she also loved, we had a very, very, very long walk on a beach. We spent hours talking about “quality of life.”)
I’d hope if (when) you face a serious life-limiting illness, that some of the earliest discussions 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 every good, reasonable, and possible option.
As I wrote in a paragraph 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. Whether your loved ones think it’s “bad mojo” to talk about death, or she or he is uncomfortable 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.
(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.)by