We Said No to One Hospice

Choices and doors

Don’t judge a book by its cover.

But we do, don’t we? Or what about this cliché:  first impressions matter? Indeed, they do.

My mother’s unexpected cancer diagnosis was around this time six years ago. After a problematic surgery, she quickly required a second one: an inevitable “corrective” procedure. These efforts were designed to provide temporary relief from a tumor-caused blockage in her colon. However, even if the first surgery had been successful, our family would have still needed a hospice evaluation.

Time, and Mom’s relentless, rotten stage-4 disease, was not on anyone’s side.

Since we were unfamiliar with the hospices where Mom lived, my two sisters and I briefly pondered transporting her to my home. Once there, she could be served by the hospice where I work. That thought evaporated like snow in the desert. Contemplating a grueling 170-mile ride and her living far away from supportive friends had too many negatives. For us back then (and for the many who suddenly face hospice care “right now”), each of the dwindling options seem to add more complications.

What should we do?

We asked the hospital staff for suggestions.

We eavesdropped on conversations between doctors and nurses.

We sought advice from local acquaintances.

The hasty gathering of information led to us to a particular hospice. (Let’s give it the brilliant title of Hospice A.) It was considered by many to be “the best in the area.” An appointment was scheduled and a hospice nurse arrived—somewhat late—for the evaluation. The nurse sat near Mom’s bed on the oncology floor and immediately began her spiel about hospice advantages and benefits. She nervously smiled . . . often. But she never introduced herself, never asked for our names, called Mom “Frances” even after we said she preferred “Fran,” and even after we reminded her several times about the name.

When asked specific questions, Hospice A’s representative provided vague answers. She was also dressed like she had been halfway to the market to grab something for dinner when her boss called to send her our way. In other words, her “book” had a lousy “cover.”

Because we were in constant crisis about Mom’s unpredictable pain from multiple surgeries, the on-again/off-again pressure to be discharged from the hospital, and the lack of a workable place for home care (Mom’s house of over four decades had been sold the prior year and she didn’t like the senior community apartment she lived in), we were not ready—at that moment—to say Yes to Hospice A’s services.

And their representative, to be polite, didn’t inspire confidence. Thus, Hospice A’s spokesperson wandered from the hospital’s oncology floor with a, “Call if you need us.”

Not likely.

Within two days we met with another hospice. Again, we had gotten various recommendations. Again, we had no idea what we were getting into. And, again, we eventually did not sign-up with Hospice B because more wrenching twists on cancer’s dire path created new, nasty detours for Mom’s care. However, the nurse from Hospice B made eye contact, asked essential questions, listened patiently, and empathized with our fears. (And, yes, she dressed like a professional.)

Because of Medicare requirements, most hospices are the same.

But they are not.

The staffs are different and first impressions do matter. Remember this: whether calmly researching hospice benefits, or desperately patching together care for a loved one during a monumental crisis, you can say “no” to Hospice A and “yes” to Hospice B.

You. Do. Have. Choices.

In your area, you may already have a trusted hospice company you know about and feel comfortable in contacting. That’s great! But if you are starting a search with minimal or no knowledge about local hospice agencies, here are a few feeble suggestions:

  • The Centers for Medicare & Medicaid Services (CMS) has a website comparing hospices based on data received about “(1) the quality of patient care and (2) the results of family survey of experiences with hospice care.” Personally, I think their information has flaws*, but it represents an excellent starting point for a search.
  • If your loved one is in a hospital setting, ask the discharge nurse for two (or more) hospice suggestions. Some hospitals and discharge nurses may have a preferred company they recommend, but be the proverbial squeaky wheel and get several hospice choices.
  • If you have enough family members to delegate tasks, brainstorm what other local family or friends have had hospice experiences and contact those folks. You might get some excellent word-of-mouth suggestions. (And I would trust input from friends or professionals you know rather than going blind while scanning Yelp.com comments on your smartphone.)
  • And I encourage anyone reading these thoughts to offer comments on how they found a good hospice.

Take a breath. Consult—even in a panicked voice—with family and friends and try to make the best decisions for you and your mom, father, grandparent, child, best friend, or . . .

Hospices are designed to care for a dying person’s needs.

But they are also there to give support to the dying person’s loved ones.

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*Let me repeat: CMS’s website is an excellent place to begin a hospice search. Nonetheless, once a resource like this webpage identifies specific subjects for comparison (pain control or communication with families), a hospice agency can overemphasize making sure they “look good” in those key areas. Additionally, all data has limits. If a trusted friend/acquaintance has had a recent good (or not so good) experience with a particular hospice, that represents important input that will never appear on a spreadsheet.

(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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Comments

  1. We have about 12 hospices in this area. It is quite the business. We have 2 with full time reps in the hospital where I work.

    • Steven:

      There is a lot behind your sentence “It is quite the business.” While hospice is not easy to “market,” both the for-profit and non-profit hospices do compete for the customer. Some of that is good. But some is not all . . .

  2. We also have about 12+ in our area as well. Yes, it is quite the business and everyone has his/her turf. Don’t mess with the turf!

    I would also like to point out with the CMS medicare compare are the dates of the posted survey information. The dates can be 1-2 years old and a hospice can change within that time period (for better or worse!)

    I prefer families to talk to hospice personnel first hand and form their own opinions. What I like is not necessarily what someone else likes. Different experiences.

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