Wednesday, December 3, 2008

Update -- Hospice Care At Home

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Home Care of the Sick By Amy Elizabeth Pope, American School of Home Economics, American School of Home Economics

Eventually I get around to things.

As you may know, I've been taking care of an elderly relative, in a hospice situation at home. Basically, I'm on 16 hour daily shifts, handling pretty much everything for an old and frail woman suffering from the complications of congestive heart failure. She was hospitalized for two weeks in October, treated to extended episodes of what could only be called torture, which ultimately we decided was "unproductive."

She was sent home, after an extraordinary struggle with doctors who wanted to keep her in their care for another three to five weeks or longer, feeding her through various tubes and shunts and so forth and medicating her up so much she wouldn't know what was going on. They figured she was not long for this world, and at least at the hospital she'd have access to prompt care if something should go wrong -- and something did go wrong the night before she was discharged.

She had a "cardiac incident" which was only controlled through massive intervention.

For a week, she'd been saying she wanted to go home, did not want all the invasive and potentially life-threatening and counter-productive treatment. She wanted to be left alone to sleep at night, and she wanted, most of all to eat and drink like a normal person.

And the doctors said "No."

Finally, when I had a rather heated heart to heart talk with her attending physician, with many references to keeping her body alive while killing her soul, and pleas to refrain from subjecting her to more pain for no gain (her condition had deteriorated dramatically since the angiogram and insertion of stents in her cardiac arteries), and with the intervention of her primary physician, we managed to get an actual discharge from the hospital, though at that time she was weak as a newborn, could not stand, could not walk, could not even lift her head.

She's been getting -- slowly -- better ever since.

She can stand, she can walk with help, she eats and she drinks like a normal person, although she can't feed herself and needs help, she no longer receives physical therapy (she hardly used the service anyway), she gets a once or twice a week visit from a hospice nurse.

Her initial goal was to get rid of the tube feeding. That was accomplished the day after her discharge.

Then she wanted to stand and to walk; it took several weeks of exercises and practice, but she has been getting up on her feet and ambulating with her walker and with help for a couple of weeks. She wants to get to the point where she can actually walk to the bathroom on her own, but that may be in the mid-term future.

She has a venous ulcer on her leg; her next goal is to heal it. The wound has been difficult. She's had a number of visiting hospice nurses who have been flummoxed by it, and a couple of them had no idea what to do and subjected her to intense agony as they fussed with it this way and that, until we had to tell the hospice service to send no more untrained and unqualified nurses to make her condition worse. Either she gets the same nurse who knows what to do and can do it relatively painlessly (with the help of a minor amount of morphine), or we terminate the service. The issue was consistency of care, and this -- generally very highly regarded -- hospice service made no effort at consistency at all until we said, "No more of this shit," and things got a lot better, fast.

I feel exhausted by the long hours and rewarded by signs of progress. Hospice care assumes the patient's condition is terminal and that it's all a matter of time, making the patient comfortable, and prayer (it's a Catholic hospice service, after all). The patient is not expected to "get better," not in any global sense, and we were informed over and over that there would be no effort at "cure."

So her progress, though slow and with setbacks, comes as something of a surprise to the service providers. There is no telling how much longer she'll live, but she's already surpassed expectations by weeks. That may not seem like much, but given where we started, it's great.

We got the hospital bill the other day. $189,000 and then some (we've been getting periodic other bills, some of which seem odd or possibly even fraudulent, but who can say? Hospital billing is all completely opaque.) Actual amount billed to the patient, however, has been less than $2,000; Medicare takes care of most of the hospital bill and is taking care of the hospice service.

Tell me again why Medicare isn't expanded to cover everyone?

There have been many difficulties and missteps through these last few months; it has not been easy for anyone. And we don't expect it to get easier.

We just do what we can.


  1. Oh my, Che - I didn't realize what all you were dealing with and just how much you have on your many plates. You seem to be juggling everything deftly, from what you shared on your post.

    Please let me know if I may be a nursing resource or family advocate for you.

    The one thing that I'm wondering if you have is a nurse case manager to coordinate and direct all of the care across providers and clinical settings.

    Nurse case managers are vital in assuring that your loved one s receiving all of the necessary services and none of the undesired ones (such as cardio pulmonary resuscitation and treatments with curative aims).

    How about respite care for yourself? have you considered having a home health aide for a stretch of hours to allow you to decompress and take some critical time to address your own needs?

    If there is a university school of nursing near you, it might be worthwhile to contact community health nursing, gerontologic nursing or end of life nursing faculty and researchers to see if there are services and supports you can access.



  2. Ann --

    Thanks so much for you words of encouragement and willingness to help. You've been down this road yourself, as so many of us are these days...

    In fact, the regular visiting nurse is her case manager. She's quite deft in handling the situation when she knows what's going on. The problems came when she was off for a week or so after one of her other patients passed away; that's when the service sent three new nurses who were completely unfamiliar with the patient or her needs. They do charting on laptop computer, so everyone has access to that information, but it still isn't enough to just plunge a stranger into a situation they aren't familiar with and aren't prepared to deal with appropriately. The same sort of problem was happening repeatedly at the hospital. There was in too many cases no consistency of care because they kept changing nurses who didn't communicate adequately with one another, and so we were back at square one -- over and over and over again. When it started happening with the hospice service as well, we said, "Stop it!"

    And they did.

    It may mean we don't have a nurse as often as they would like to send one because we insist on either the same nurse each time, or one who is familiar with the patient.

    The problem of consistency of care seems to be getting worse throughout the medical field, as more and more caregivers and patients are seen by administrators as nothing more than interchageable parts, to be swapped in and out at will. Apparently the overall outcome statistics are "good enough" that they don't see the problem. Yet most of the disastrous outcomes (that lead to over 100,000 unnecessary deaths per year from "medical errors") are ultimately due to this administrative error in judgement.

    I could go on, but I'll spare you!

    Overall, the hospice service we're using is good; they provide just about anything we need just about any time, and when things went wrong, they listened and they changed their procedures. They have a lot of home health services and aides available, and we make use of some. Respite care is available as well so we can take some time off when we get to that point.

    For now, we muddle through!