Tag Archives: hospice

HospiceCare – Medicare – Patient Care – Collapses for Hospice Patient

HospiceCare – Medicare – Patient Care – Collapses for Hospice Patient, Mike MacDonald last month.

My hospice experiences have been an overwhelmingly positive, including my own mother’s outstanding care from one in Gig Harbor.  Mike’s experience happened in Maine – and makes me wonder how many other hospice patients around the country were and are caught in this latest stress fiasco for terminal patients and their family?

Greetings! Last month Mike MacDonald reached his six month Hospice Care and was ‘discharged.” Mike and his wife, Pat, were left hanging without medical insurance, no oxygen, medications, nothing to pay the doctor or hospital should he need one. The EFFORTS COPD community rallied to help.

Mike and Pat managed to work through their failed Hospice system, but the lingering question is will it happen to us when the time comes? Have patient safeguards been set into place?

One day it will be our turn for Hospice –  How is Kitsap County Hospice doing?  With Harrison’s hospice announcement recently in this newspaper, Kitsap County now has two for choice.
The Hospice patient and family deserve Hospice CARE – not a toss without medical coverage to sink or sink.
Following is Mike’s failed Hospice story update:
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“Hello friends — A quickie note this time.

For those following my odyssey of hospice-care to no-care, I am pleased to post that all of my prior Medicare access has been totally restored as of June 18. My hospice had been “paused” on May 28 with the intention that I would re-enter Medicare on May 29 and return to hospice when I got a little sicker (my doctor’s crystal ball said that date was most likely to be July 23rd lol). We of course had the foul-up where my Medicare/CMS records weren’t properly updated resulting in my having no coverage (prescription, doctor, hospital or DME) for anything related to my lungs. I am still waiting on the wheelchair to be replaced.

Thanks again to all who wrote/called their congress reps, etc. I was touched and appreciative. We see over and over again what a warm community this is where so many of us rise to help each other often in spite of our own illnesses.

We had a visit yesterday from VNA of Southern Worcester County — a small VNA office based here in Webster, MA with a satellite office in Auburn, MA that provides palliative and hospice care services. As of yesterday I entered their palliative care program. My situation is not normal for them…they most typically step in following a hospital admission. In theory, they will evaluate me for re-entry into hospice services when the time is appropriate. In fact, the “in-take” nurse that was with me yesterday wanted to refer me for an evaluation right then but my wife wouldn’t hear of it (more on that below) and I think it’s premature anyway.

My regular VNA nurse — whom I haven’t met yet — will stop in today. Normally, there would be daily visits initially settling back to 3 times a week when appropriate. I’ve already expressed my wishes that we talk more like 2 times a week. They would be responsible for palliative care which is essentially “comfort” care but not quite so much as in hospice. That’s a little murky: while under hospice, drugs are often dispensed in a manner that’s not healthy over the long term with the theory being that the patient is dying already and so longer-term consequences aren’t as important. Under palliative care, they do care more about the longer-term consequences and there isn’t necessarily any assumption about death. In my case, the nurse and the doctor’s office will have to work that out but some of my drug dosages are probably already into the areas of unhealthy.

To my surprise, this *is* being covered under Medicare. CMS has tightened access to at-home services with the goal being of reducing in-home Medicare expenditures by 14% over the next 4 years. Learning that I seem to qualify for a host of in-home services comes as a very pleasant surprise. I can get an in-home health aid to help me bathe apparently — not that I want anyone to help me that way. I am eligible for occupational therapy which I believe for me means learning how to get around the home, how to conserve energy, etc. I don’t know that I need or want those services either but I’ll be open-minded. They also talked about music therapy to my surprise…I would be likely to use that.

We had entered this with the intention of hiring a “private duty nurse” paying out of pocket to lighten the load on my wife, Pat. I was a little concerned because whereas Pat was talking about 2 hours a week, I suspected 2 hours in-home care was probably more like 4 hours a week after factoring in travel, time talking to my doctor’s office, etc. I could easily see this running $1000 a month. No expense would be too high as far as Pat is concerned…she was really traumatized badly by the disaster with the last hospice organization (VNA Care Network which covers most of central and eastern Massachusetts). Pat actually objected initially when we talked about billing expressing a preference to pay this out of pocket and not involve Medicare at all for fear that they would screw things up so badly again. She’s really quite emotional about this — and understandably so — but I also think there is no danger at this point because we’re not signing away anything (whereas entry into hospice signs away access to care for the terminal illness to the hospice provider).

This does not bode well for when it’s time to go the hospice route. I don’t think Pat will go along with that again but for now I have to wait and cross that bridge when the time comes.

Physically, I’m not doing all that great though I think I am a little better the past couple of days. One of the ironic things about the May 28 discharge from hospice was that I was already sliding into an exacerbation on that date. At times, I’ve been fairly ill since then. Still, I don’t think I am near death. I wouldn’t be shocked if that changed 3 weeks from now but I also wouldn’t be shocked if I was writing the same thing 6 months from now. My doctor feels I am dying but admits that I’m tougher than he had thought. I am definitely progressing in the illness and not happy with how compromised I am in my ability to do much of anything.

By way of comparison, I have a friend who I started working with in 1989. We worked closely for 7 or 8 years and remained in touch since. He’s 54 years old and for 2 years has been battling an aggressive bone cancer. He’s been through 5 surgeries now including the replacement of his right pelvis with a bone from a cadaver. As he expressed to me a couple of days ago via email, he really shouldn’t be alive but he’s taking every day he can get and is planning on getting a tattoo next month. I’m not one for tats but good for him. When I think of my own illness, I have only to compare myself to people like him and realize that I’m still a pretty fortunate person…this could be so much worse. I have the means and the support system to deal with this; beyond that, I don’t have much control except for maintaining a positive attitude. For the most part, I do just that.

Thanks for listening and sorry for my blatant lie at the top of this note…I really *thought* it’d be brief.
Mike”
Michael MacDonald
:::Webster, MA

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Thanks for listening…. Sharon O’Hara, COPDer  -familien1@comcast.net

Thanksgiving 2009 and Hope

It is Thanksgiving and I write here, off topic, in heartfelt gratitude.

Plants and people, life and death, disease and health…seem interrelated.

I once had a bamboo flower and lose all its leaves. Even knowing it had to be dead, I could not compost it. I moved the pot and the bare, dead looking sticks to another spot in the yard. I kept an eye on it and occasionally watered it. Years later, it is thriving in- ground along the driveway.

Patience and never giving up works for plants, people too. Not always.

Other bamboo and different plants I cared about have appeared dead and, left alone, came back. Not all.

The splendid Magnolia grandiflora my parents gave me to plant in memory of Norman, my little brother… came back to life after three years of looking dead in the PT garden where it was transplanted.

The gardener, who helped mom in her yard, dug the tree up from their yard, bundled the roots and drove the distance to transplant it into my newly designated, Norm’s Memory Garden.

I had the pick-ax ready as he dug the planting hole and soon heard the ring of his shovel hitting the native hard clay and rock…about 18” down.

I handed David the pick and asked him to loosen the hardpan soil to mix with the enriched topsoil of the garden bed and the rich soil around the tree’s large roots from the fertile ground of its old home.

He reluctantly did as I asked. As a brand new master gardener from the Kitsap County Master Gardener course, I learned of a new world of soils, plants, environment and came to understand, love and appreciate bugs and their vital work in our world.

Time after time David swung the ax over his head into the hard ground. Finally, he had the depth and width suitable for the large roots to reach out into its new home and I was satisfied.

David mixed the soils with the native soil and carefully moved the tree into place. He filled the hole and watered the soil in.

Norm’s memory tree was now at home in the middle of the south bed closest to the house. It was beautiful and I envisioned it would one-day tower over and shade the upper deck.

Norm’s Magnolia grandiflora tree became a focal point as I worked around the property or glanced out a window.

I watched as the beautiful magnolia began to fail, the huge leathery green leaves gradually withered and fell. Norm’s tree began to look dead.

Taking the WSU Master Gardener course, I knew the big trees were not easy transplants but still, I left it alone and waited.

Day after day, month after month, then year after year I watched and waited.

Three years after the transplant, Norm’s memory tree began to form fresh new leaves. The healthy, shiny, thick, huge leaves gained in strength and abundance another year or two until she was splendid in her beauty and began to grow.

Fast forward to now…

The little bulbs were outside in a small pot. Brought inside, the soil dried into dust around and through the girded dry roots. The bulbs dried until the little mass was feather light. I lifted the little bundle into a small white dish to keep until…

Yesterday, I saw the green of new growth and inspired by it, wrote this letter to my son and his beautiful, spiritual new wife.

Life Peeks from Dust
Life Peeks from Dust

Dear Son and Bride….
New buds spring from the dead and troubled stocks of yesterday.
Sprouting from unnourished, dry and withered bulbs, the tiny sprouts grow strong as they form from the old as if to say.
HERE I AM, YOU LUCKY PEOPLE!
Today is a renewed spirit, fresh and ready to write in the smooth sand of a new beginning.
Light, joy and laughter does not come easy, but it comes steadily just as sand flows endlessly through the bottomless hourglass of God’s light. Along the way, the flowing sand moves over the rough bumps until they are nothing.

Light, joy, love and laughter… a new dawn, a new day, a new begin.
God works in mysterious ways and darned if I can figure it out but I do not have to…. I am just grateful He does not give up.

Bless you…
Love… Mom Sharon – Thanksgiving, 26 November 2009
(My son lovingly cared for his grandmother at home, with hospice, until she passed)

More later… Sharon O’Hara