Out of a Cardboard Box: Learning About Hospice

Six weeks before Grant died (three years ago this week) we invited hospice on to the property, signed their paperwork, and started getting acquainted with the individuals who – to one degree or another – would assist and serve us for an undetermined time.


We learned many things during the time we shared together with dear Sandy (our assigned nurse) and I learned more things after Grant walked on toward Home.

I don’t know if all the procedures, policies, and rules are the same nationwide although I do know that every local hospice service is ultimately connected to the national office.

Things We Learned

In No Particular Order – Any Necessary Time References

Are There Somewhere

  • The moment we signed the paperwork for hospice, Grant’s Medicare Coverage ceased. This means that:
    • All ongoing care is authorized under hospice’s perceptions (or the local office’s perceptions) of what does or does not constitute palliative care
    • Our physicians are no longer in direct control of his care but could suggest care
    • All medications/prescriptions are now under the control of hospice – whether or not the individual’s physician or pharmacy authorizes is not a factor
    • All pharmaceutical products will now be delivered from the pharmacy that hospice has contracted with (regardless of time day or night).
      • We had pharmacy deliveries as late as 11 pm – scared me half to death the first time there was the sudden pounding at the door two hours after he had gone to sleep. I asked the driver if his employer had considered that some exhausted, CC spouses of terminal patients might be really alarmed and frightened at such sudden ruckus. He agreed with my point.
    • Whether or not continuing expenses with  hospitals will be paid IS at the discretion of the office staff of the local hospice office. The fact that hospice presented and accepted a contract with the patient does not equal assurance that they will pay the bills
      • Their broad policy is that will not pay anything they have not agreed to in advance
        • We understood that
        • Three weeks before he died the hospital recommended that we have a biliary tube installed so that I could drain fluids (up to 13 liters a week at that point) at home instead of having to make the 80 mile round trip to the hospital three times a week
        • Our Hospice nurse spoke with the doctor who recommended that as a palliative care measure as she sat in our living room
        • Then she immediately called her office to explain to them what Adventist Medical Center was recommending as palliative care, the installation of the tube to be done as an outpatient procedure the following Friday
        • Her office authorized the procedure and related expenses (remember – Grant no longer has any medical insurance – the contract is now between hospice and the provider facility –
        • About a month after Grant died I began receiving bills in excess of $11,000 from the hospital, indicating that “the insurer” had declined payment. Ah. Interesting.
        • I contacted hospice offices repeatedly and could obtain no response of any kind, either on the phone or in writing. Nurse who had requested and received authorization was hung out to dry.
        • I contacted the hospital accounting department repeatedly and was assured that those bills should not be coming to me. They kept coming.
        • It was June (he had died on March 1) before I was finally assured by hospital personnel (who were not happy campers with hospice by this time) that they still agreed I was not responsible for the bill and they had written it off as a loss. So there ya go.
        • In summary:
          • Hospice had agreed to pay all authorized expenses; no procedure was done that they had not authorized
          • After the fact, they refused to pay without ever disputing that they had agreed to the procedure
          • The hospital ate the loss – I was NOT a happy camper about that
  • Hospice service perspective assumes that any given client may want/need (oh, they really hope you do – sometimes) 24/7 hand-holding, help with finances, legal advice, spiritual advice….and they sort of assume that most clients (or one of their family members) are probably being abused in some way.
  • Their assumptions reflect both our national culture and their personal experiences. Can’t be helped. I was so glad son Eric was present for the intake and for later conversation so he could help me untangle that none of this was personal – they are just covering their bases. (And yes, they asked about guns in the house….fortunately for them, they did no request that they be removed. “No, you will not take our long guns” would have been the beginning of the end of that conversation.)

NOW I am careful to the point of paranoia about always, alwaysalways affirming in advance of care that any provider’s accounting people/office staff is/are satisfied that they have affirmed agreement with Medicare and my supplemental that treatments are covered.  PRIOR TO CARE I make sure that THE PROVIDER has accepted responsibility for confirming the coverage. I confirm that at least twice in verbal contact prior to any treatment…making them check their record again while I stand there waiting for them to assure me I am not liable for any payment under my coverage which THEY have accepted and which THEY have confirmed to THEIR satisfaction.

I counted the other day – I am now up to almost 100 appointments in various facilities during this past year of treatment for breast cancer….

……God bless State Farm Supplemental Medical Care – I have no deductibles and no co-pays. Ever. My premium is $197 a month and worth every penny. It’s my version of an FSA. (Commercial ended.)

One of my radiation treatment buddies had one of the Advantage Plans: she and her husband were paying $250 a week/copay for her treatments. With regard to my 33 radiation treatments, Medicare and State Farm have written checks to the radiation clinic totaling between $75-80,000 for me, without a hitch.

You see why I want to be sure about the provider and the insurers agreeing re who’s going to pay what – beforehand…..if I were to leave the 20% that Medicare doesn’t pay to chance – I would just have to offer them a lien on the house if somebody lost interest in paying!!

Admission: Sometimes personal stress levels come through in my writing. Some of my chemo-fog (oh, yes – you can believe that’s a real thing and can go on for years after treatment) at the moment expresses itself in stress due to short term concentration issues but I’ve decided to do some writing in spite of that – and try to manage myself appropriately.

If I fail – oh, well. I’m learning more about the reality that life doesn’t end when I fail. So glad for that. And I’m in charge of the delete button!!! YES!

Today’s music:

This entry was posted in Cancer is a Cardboard Box, Endurance, Journaling. Bookmark the permalink.

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