Lesson 1375 – Hospice – It may not be the end

 

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There are different levels of hospice care. A patient is eligible for hospice benefits if she has an illness from which she will never recover. If it is determined that the condition is present and the patient is not actively dying, a hospice nurse would visit either the home or a nursing home for a prescribed amount of time to help assist with difficult tasks, like taking showers, taking a walk, or even getting the medication straight.

That “illness from which she will never recover” covers a lot of bases and it’s why you’ll hear stories of someone’s dad being in hospice for 6 months, or someone’s mom getting hospice care for years for her C.O.P.D. Some patients can live for a long time while receiving hospice benefits.

A residential hospice, however, is different. A patient is sent to a residential hospice facility if she has an illness from which she will never recover *and* it appears she will die within a few weeks. Residential hospice is not a nursing home. It is a place where people go to die comfortably. The average stay at a residential hospice is 2 weeks.

In fact, and this was an incredible shocker to me, if they can stabilize you, even though you are actively dying, you will be moved to a nursing home. I saw this happen many, many times.

While there I saw countless patients come and go. Most of them died, however I saw many leave for nursing homes. “It’s a money thing” said the Doctor who was very frank with us when he explained the potential decision to move my mother. After two weeks, the government does not pick up the hospice tab and the instituion begins to lose money on the patient.

Of course, this was appalling to hear when he’s talking about your mother. My mother was actively dying, there was absolutely no argument about that.

“You mean my mother isn’t dying fast enough?” I asked Dr. Death (a charming little nickname my brother and I gave him.)

“Blame your government, don’t blame me.”

Dr. Death wasn’t being cruel, he was being forthright. Again, the average stay at a residential hospice is 2 weeks, if it looks like you’re going to linger then you’ve outworn your welcome. They need the beds, it’s a place where people are dying to go (and then dying to get out of.)

It seemed so unfair that anyone has to be concerned about government costs and being kicked out of a hospice – where you receive professional hospice care – in order to go (be shipped) to a nursing home – which although professional, would not have the same level of care. I had thought end-of-life meant you were taken care of with dignity, grace, and comfort, not shuttled to another institution due to the financial bottom line.

Even still, I understood the decision. Hospice is a business and a business has to watch its costs. They lose money on patients who linger. I get it. It’s a very difficult conversation that Dr. Death has to have over and over with patients’ families. Which is why I’m telling you about it – this could happen in your situation.

Residential hospice may not be the end.

But here’s the thing. They can’t transport a patient if she is not stable. In my mother’s case they had to get her pain and breathing under control. They would adjust her meds, get it under control and then she would have an episode that showed it was clearly not stabilized. She kept declining and as a result she was able to stay in hospice for 8 weeks until she died. It sounds odd, but I will forever be grateful that mom’s dying couldn’t be made to behave.

Here’s the story of another patient who was being considered for transport. She was a large woman who had had a massive stroke. She couldn’t walk and because of the stroke, she couldn’t swallow and was non-verbal. She was confined to a bed and wasn’t given any food or water ( both considered choking hazards). Because she was in hospice, she wasn’t hooked up to an I.V. for hydration (that kind of defeats the purpose of hospice.) After one week she was still alive, alert (she smiled every time I said hello) and was only using Tylenol for pain. Because of her size, her death could take weeks and her Dr. (who happened to be Dr. Death) said it could even take months. He’d seen it happen.

No one disagreed that that woman was dying, it’s just that it was going to take too long, way too long. Off to a nursing home for her.

It’s harsh, but it is what it is. That’s government and business at the end of your life. Who knew?

 

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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

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5 Comments

Filed under Inspiration, Personal, Points to ponder, The Family

5 responses to “Lesson 1375 – Hospice – It may not be the end

  1. Susan

    It is sad. I always thought hospice helped you die with dignity too, but have heard too many stories. My sister had brain cancer and died at home with a hospice nurse coming in to help her every day-that seemed to be the best way.

  2. Robbi Orr

    I had no idea! This is unbelievable!

    Thank you for letting us all know about this..

    Blessings,

    Robbi

    _____

  3. Three of my four grandparents passed away comfortably while in hospice care. My final grandmother was fortunate enough to have at home hospice care. Sure it cost my family a decent amount of money for about two months, but to know my grandmother was comfortable until the end makes it worth every penny. (Fortunately her home is paid off and they took a loan against to home to cover costs) Her caregivers were amazing and adored her.

    Like your mother, she passed away from dementia, with a side of esophageal cancer (diagnosed last Thanksgiving). She had no idea about the cancer (thank you Dementia?), and she thought she was coming down with the flu.

  4. My niece battled brain cancer and liver cancer and died recently at home as she wished with hospice home care. Those caregivers were wonderful and it was as gentle and end as possible.
    But one of my ancient uncles (100) had fallen and injured his hip. The hospital “social worker”, a medicare person, and an insurance agent talked him into refusing food, water, and care – despite my cousin tried to talk him out of it – and he died in their “hospice area”. Some hospice. They convinced him his quality of life was going to be poor and it was expensive treatment- and besides wasn’t he tired with all his immediate family already gone. Horrible people….paid by your government. Beware if you have elderly – do not leave them along in the hospital room for a minute.

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