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It's a shame you have to die in order to get this kind of medical care.

Sat Apr 15, 2006 at 12:41:01 PM PDT

I sit, listening to the labored breathing coming from the next room.  The end will come probably sometime this next week, likely as the result of a fever and while she is asleep.  As deaths go, it'll be one of the best possible, with minimal pain, discomfort, and fear.  

I'm talking about my mother-in-law, who is 88, has Alzheimer's, and for whom I have been primary care-giver for the last couple of years.  She wasn't particularly active in politics, wasn't a celebrity, didn't invent anything, wasn't an author.

Then why am I writing about this very personal event in this very public political forum?

Because some short time ago, when it became clear that my mother-in-law was not going to recover from her latest medical problems, my wife and I decided to enter her into Hospice.

I knew of Hospice as an medical movement designed to make the last weeks or months of life as comfortable as possible, with a primary emphasis on palliative care.  And this it is.  But I've discovered that it is so much more.

Our "hospice team" includes a nurse who comes by as often as we need her.  If that's once a week, or twice a day, it doesn't matter.  We have on call personal care aides, a chaplain, a social worker (to help me and my wife with any of the issues surrounding the imminent death of a loved one), as often as we need them.  If we need any medical equipment, from a hospital bed to oxygen, it's arranged for.  All prescribed meds for her condition are delivered to our door.  Basically, anything we need or want which pertains to my mother-in-law's health is provided.  And it is all 100% covered by Medicare.  

And it is a shame that you have to die to get this kind of medical care.

Because that's the deal.  This kind of care is only available to those who enter hospice.  It makes monetary sense, since by helping those who are facing death to die with dignity, at home, with family, the medical care system is saved massive amounts of money trying to prolong life through the use of increasingly aggressive (and expensive) means.

But similarly, wouldn't the medical care system save massive amounts of money by proper preventative care for everyone?  Routine medical problems, dealt with before they require the intensive resources of an ER, could be resolved efficiently and with less pain and suffering if everyone had access to free (or, more accurately, government-funded) primary care.

Oh, I know, we should all be good rational consumers, and if our health care costs were coming out of our own pockets directly, then we're more likely to minimize waste.  It's the free market at work and all that jazz.  Except that when it comes to health care, you just want to get the care you need, not to go shopping around for the best deal on a CAT scan to locate exactly where that tumor is that needs to be removed.  

Medicare works.  It's proof that a government-run health insurance system can make rational, and even considerate, choices available to us all.  It should be the model for our entire health care system, and put us on a competitve par with all the other industrialized countries in the world.

I'll try and stick around to be a good diarist and participate in any discussion, but you'll understand if I need to be gone to care for this lovely lady in the next room.

Tags: Death, Health care, medicare, hospice, Alzheimer's (all tags) :: Previous Tag Versions

Permalink | 33 comments

  •  Do not get me started today (4+ / 0-)

    My son had an abcessed tooth(which has been removed) which I took him to the ER for(it was evening before he brought it to our attention that he had a bump in his mouth). Accidentally some of his medication spilled on the floor(little six year old jumping around). In order to get the medication for him to finish his treatment they want me to come back to the ER(We are talking about 30 mls of Keflex liquid now mind you). I can not get over the absolute ignorance of having me sit in an ER for hours with a six year old so that I can make sure that he completes his antibiotic therapy.

    •  Maybe your pharmacist can request a refill (3+ / 0-)

      Recommended by:
      Shadan7, AllisonInSeattle, cwaltz

      authorization from the ER doc. I'd try calling the pharmacy you got it originally filled at first - can't hurt, eh?

      •  tried that (3+ / 0-)

        I was a pharmacy tech in the Navy so we often did stuff like this out of courtesy(wasn't uncommon for a spill or someone to accidentally leave it out of the fridge) so the Walgreens pharmacy was my first phone call. They said the doctor needed to write a Rx for the 30 mls. I was even willing to pay for a full bottle and only asked to get the 30 mls. It seems pretty dumb to tie up an ER doctor for 30 mls of liquid antibiotic. I'm pretty aggravated at the whole process. Thanks for taking the time to respond though.

        •  Not just dumb... (2+ / 0-)

          Recommended by:
          joynow, kitchen table activist

          It's not just dumb to distract an ER doc with something like this, it is completely pointless.  There is a record of the Rx on file - all it would take is a few moments for someone on staff to pull it, then send authorization to the Walgreens to distribute the remainder.  Yeesh.  Right there is a good example of how blind bureaucracy cripples health care.

          Read or *listen to* my SF novel for free. (-7.13/-7.33)

          by Shadan7 on Sat Apr 15, 2006 at 02:19:30 PM PDT

          [ Parent ]

        •  I was a pharmacy tech, too! (2+ / 0-)

          Recommended by:
          Shadan7, tvb

          I even got the "my dog ate it" defense to justify a refill once (didn't fly).

          This kind of situation just magnifies all the flaws in the current "system" (if you can still call something so broken a system - of catastrophic failure, maybe!) In this situation, everyone just doubles the profit, and (more regrettably) your inconvenience. Grrrr.

          •  I honestly didn't want a refill (1+ / 0-)

            Recommended by:
            AllisonInSeattle

            I just wanted the doses so he could complete the therapy. I was even willing and did pay for the full amount. Anyway, my husband got his mean voice out with Walgreens and their called their commercials "full of crap" (the one where they say Walgreens pharmacists go the extra mile)so the pharmacist ended up calling the doctor on call at the hospital. We were able to get what we needed without a long wait at the ER. I guess the moral of the story for me is to be more intimidating, a little less nice, and cause enough of a ruckus that it is easier to give me my way and make me go away. :)

  •  Death and dying (7+ / 0-)

    I'm a nurse, and when I worked in a nursing home, our state started allowing Hospice to work within long term care as well as private homes.  They were a godsend to our overworked CNAs and provided follow up grief counseling to the families as well.  You don't realize how sweet life is until you have confronted death up close and personal.  Are we all here to help each other or not?  Isn't there something about that in the Bible?    

    "The light which puts out our sight is darkness to us." Thoreau

    by NancyWH on Sat Apr 15, 2006 at 01:19:13 PM PDT

    •  I'm not a person of faith... (1+ / 0-)

      Recommended by:
      AllisonInSeattle

      ...but taking care of one another seems to be pretty basic to the idea of "civil society".  Which, of course, is why all the wingers are so big on their perverse notion of "self reliance"...right up to the moment they need help from someone else because of threat, disaster, or illness/injury.

      Read or *listen to* my SF novel for free. (-7.13/-7.33)

      by Shadan7 on Sat Apr 15, 2006 at 02:22:17 PM PDT

      [ Parent ]

  •  My room mate Jack died in hospice (8+ / 0-)

    on a floor in the hospital leased out to the unit.  It was a wonderful quiet way for him to die and they gave me so much support and kindness.  One of the things that made me so angry during the Shiavo case was the people outside of the Hospice acting like a loud lunatic circus.  
    Hospice is one of the few good things that have come from medicine in the last few decades.  I agree that we need medicare for everyone.  

  •  bless your heart, Shadan7 (7+ / 0-)

    My mom died in hospice.  Her coming death was accepted by her, and my family and with all of us, the decision was made that no extraordinary measures would be taken on her behalf. Because we talked about it prior to mom being unable to speak for herself, there were no doubts, no arguing over 'the best thing to do' and no questioning motives.  Her passing was peaceful, quiet, and with her family by her side--as death should be.

    May your mother-in-law have a peaceful quiet passing as well.

    Be well, and be strong.

    When do I get to vote on your marriage?

    by tvb on Sat Apr 15, 2006 at 01:42:40 PM PDT

  •  Wow.. (2+ / 0-)

    Recommended by:
    Shadan7, Dreaming of Better Days

    I'd heard of hospice but I never really knew what it was or what it was for.  thank you for sharing your story.

  •  We had hospice when my great aunt died (5+ / 0-)

    last year at 92, and they were wonderful people. Knowing what I do about health care in America, just from struggling within the system to get care and see others struggling to get care, it's amazing to me that we could have invented a medical program that works so well!
    Really. How did we get it right with this? And so wrong in everything else?
    Hospice was wonderful. Kind, caring, gentle, reassuring. We were scared, of course, not knowing what to expect and whether we could handle it. Would she be in pain? Would she be scared? Would we be really scared when the time came? Would we have enough medicine to handle her fears/pain/panic?
    And we did. We had everything we needed. If we got worried or scared or had a question, hospice was on the other end of the phone, 24/7.
    My aunt died very peacefully.There were moments of agitation, as she struggled for breath, but we had liquid morphine and something else that eased her breathing. We had breathing treatments for her and oxygen.
    In the end, iti was like she just sank further and further away, ever so slowly, barely breathing, then breathing less and less and less, until she just stopped. Died in her own bed, on the farm where she was born, just as she wanted, with family by her side.
     

    •  This sounds... (0+ / 0-)

      ...exactly like our experience, even unto the (likely) cause of death and treatments for palliative care.  My wife and I knew that we would reach this point at some point, but it came upon us unexpectedly - meaning that we hadn't had a chance to fully bone-up on what Hospice would mean.  Hence my surprise at what was involved.  But, unlike so many things in the health-care system, this came as a pleasant surprise at a time when we really needed a pleasant surprise.

      Read or *listen to* my SF novel for free. (-7.13/-7.33)

      by Shadan7 on Sun Apr 16, 2006 at 06:07:29 AM PDT

      [ Parent ]

  •  I can't say enough about (4+ / 0-)

    how much hospice has meant to me. My mother died at my sister's home, surrounded by her daughters. Her last days were filled with love and joy as friends and relatives - including grandkids and great-grandkids of all ages - trooped in and out of my sister's house to talk and joke with Mom, get last kisses and give one more hug before we had to say goodbye. We absolutely couldn't have done it without hospice. I can't imagine anything similar being possible at a hospital.

    Nine months later, I was caring for my best friend of 30 years in her home as she died of cancer. If I could canonize her hospice nurse I would. Her death was much harder, she was too young, and cancer is not an easy way to go. But I could be there for her - as I promised I would, because of hospice.

    It is hard, in a way, being there for someone who is dying. But more importantly, it is a privilege to be able to do it, as you clearly are realizing, Shadan. In addition to the wonderful care and support that hospice gave to Mom and Melanie, that was a gift that hospice gave to me.

    I am not going to sit here and be an idle spectator to the diminution, the subversion, the destruction, of the Constitution. - Barbara Jordan

    by Janet Strange on Sat Apr 15, 2006 at 10:37:24 PM PDT

  •  Hugs (5+ / 0-)

    My father died of Alzheimer's-related problems.
    I wish to Heaven we had a hospice then. My mother-in-law died there and it was a wonderful place, where she was able to be mostly pain-free.   Hospice nurses are superb and care for the whole family.  Thank you for your care and your diary.

    War is not an adventure. It is a disease. It is like typhus. - Antoine De Saint-Exupery

    by Margot on Sat Apr 15, 2006 at 10:38:27 PM PDT

  •  I can personally testify as to the efficacy (2+ / 0-)

    Recommended by:
    Shadan7, AllisonInSeattle

    of hospice care.

    My sons father was put on hospice after he recovered from a coma, but was found to have a degenerative disease. While on the care he had the most excellent doctor in the world.

    This doctor actually took the time to wade through his foot-deep medical chart. He found that he was on medications which were interacting in a harmful way. He really listened, and paid attention.

    Amazingly enough, my sons' dad did not die. he got better and better. I met this doctor, and he said that he did hospice because it is the only type of medicine where doctors really get to practice in the way that old country doctors did... with a focus on the patient - and do real diagnosis.

    a hospice nurse told me that it is not unusual for this to occur. that people do get better on hospice sometimes.

  •  I am a firm believer in and supporter of hospice (2+ / 0-)

    Recommended by:
    Shadan7, barbwires

    In a course I did in my masters in the Catholic seminary (I was neither a Catholic nor studying for the priesthood) on dealing with death and dying, I did an extensive study of the hospice movement.

    When we bought our house in Arlington, we are half a block away from a hospice, our community association meets there, and I have volunteered there from time to tim.

    Thanks for writing this diary, which I had missed,but which thanks to SusanG's diary rescue I encountered.

    do we still have a Republic and a Constitution if our elected officials will not stand up for them on our behalf?

    by teacherken on Sun Apr 16, 2006 at 01:30:26 AM PDT

    •  Good for you. (0+ / 0-)

      You volunteered?  Good man.  When this is all over, after I have recovered, I expect I will find some role to help the hospice movement.  

      But "good on you".

      Read or *listen to* my SF novel for free. (-7.13/-7.33)

      by Shadan7 on Sun Apr 16, 2006 at 11:43:16 AM PDT

      [ Parent ]

      •  did followup phone calls (0+ / 0-)

        on thirty day anniversary of the death  -- they felt that support of the family had to continue after the passing.

        Also occasionally volunteered to help staff on things like Christmas or Easter so staff could have off to be with their families  -- I didn't need much training to man a switchboard!!!

        Haven't done it since I became a teacher backmin 1995 -- not enough time, and what used to be 'free"time now gets consumed by blogging   -- having a diary high on the recommended list often confers the burden of following it to see if there are comments requiring one's response.  Mine has been in the box for about 10 hours, and at #1 for the last several.

        do we still have a Republic and a Constitution if our elected officials will not stand up for them on our behalf?

        by teacherken on Sun Apr 16, 2006 at 02:00:08 PM PDT

        [ Parent ]

  •  Thank you for this diary (2+ / 0-)

    Recommended by:
    Shadan7, barbwires

    Very timely. My husband's grandmother (95 years old) has been referred to Hospice and will be meeting with them tomorrow. While I am so sad that this is apparently the end, I am glad that she will be able to die at home, with dignity, with a minimum of discomfort. If she hadn't had the money for in-home care up until this point, she'd have died in a nursing home years ago.

    My grandmother, on the other hand, is in the hell of a Medicaid-funded nursing home, being pumped full of drugs to keep her compliant until she kicks off and opens up a bed. All I can say is, beef up your 401k while you can. In this country, the biggest difference in death with dignity and death like a dog is money.

  •  My thoughts are with you (2+ / 0-)

    Recommended by:
    Shadan7, barbwires

    And I just wanted you to know that hospice is as much a gift to the medical team as it is to the family and patient.  After having a grandfather die a very difficult death with hospice brought in only at the very end, I did a rotation (med school) in our wonderful hospice facilities.  It is, by far, the best experience in medicine I've had thus far.

    Politics is like driving. To go backward, put it in R. To go forward, put it in D.

    by gkn on Sun Apr 16, 2006 at 11:46:37 AM PDT

  •  I'm the primary caretaker for my MIL (1+ / 0-)

    Recommended by:
    Shadan7

    This discussion was important for us to see.  My wife appreciated it as well.

    Thank you.

    Never, never brave me, nor my fury tempt:
      Downy wings, but wroth they beat;
    Tempest even in reason's seat.

    by GreyHawk on Tue Apr 18, 2006 at 03:09:55 AM PDT

    •  Well, good luck. (1+ / 0-)

      Recommended by:
      GreyHawk

      I hope it is as rewarding an experience for you.  Depending on her condition/situation, you might want to see if there is a local support group for you as a care-giver in a non-traditional role - it helps a lot to have contact with others who have similar experiences.

      And feel free to email me.

      Read or *listen to* my SF novel for free. (-7.13/-7.33)

      by Shadan7 on Tue Apr 18, 2006 at 10:14:33 AM PDT

      [ Parent ]

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