EVERYONE should be Privy to certain Information, regardless of Internet Access and Skills, Physician Communication Ability, Current Ability to Absorb and/or Hear the Information at that moment, etc.
Is it really okay for ANYONE to tell another human being that due to lack of Medical Options that their life is over and THEN to send them out the door without sharing with them VITAL RESOURCES regarding AVAILABLE?!
Without googling Palliative Care and contacting them on our own, my Dad would not even have had a pain relief prescription, he was dying from AML without even a prescription for relief from the intense pain.
5 comments:
Letter I've sent out...PLEASE feel free to Copy/Paste and Thank You!
All that my Father was told by his Oncologist was that medically he had no more options, he was was then sent on his way with no resources and never informed of Palliative Care, not verbally, not via print materials, no information shared in any form nor matter...
http://ubb-lls.leukemia-lymphoma.org/ubb.adp?frame_url=http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro&item_id=9388
The only way that we found out about Palliative Care was through my extensive (and desperate) googling...thus on the internet I discovered Palliative Care, I immediately called the closest Palliative Care facility (St. Mary's Lacks Cancer Center) and they were wonderful, we literally cried tears of relief and comfort as they even set up a house visit at my parent's home the very next morning.
(I discovered Palliative Care online 5 days before my Dad died from AML)
They were also the ones to bravely share that contrary to my Father's oncologist (Dr. Amy C. Vanderwoude) 2nd opinions are a good thing, a thing called clinical trials exist, Palliative Care is available, pain medication can be prescribed, introduced us to Hydrea, informed us that my "no options" Father was the healthiest AML patient that they had ever seen, that Hospice is another option, etc.
In an attempt to put a positive spin on this, I would like to (if it is already a policy, all the better, I would so appreciate knowing either way please) somehow help however I might be able towards requiring that oncologist's share Palliative Care information and resources in written form...
Prior to contact with Palliative Care, My Father, My Family were left with no options...it was such a dark, scary, horrific time anyway and then to not have any resources or information shared by his oncologist with us...I feel compelled to ensure that others need not go through the additional agony of enforced ignorance as we were instructed to abide by and endured.
More on my sweet Daddy, who died from AML on 1/11/09
http://papamore.blogspot.com
Thank You so much for your time and for all that you do...
Sara Huizenga Lubbers
lubbers.sara@gmail.com
Bonnie B
Member posted 01-17-2009 09:48 PM
Incredible. Our experience was very different from your dad's. The hospital walked us through the process of linking up with palliative and hospice care. Not doing so for a patient and his family is unconscionable! Kudos to you for your persistence.
http://ubb-lls.leukemia-lymphoma.org/ubb/Forum21/HTML/001709.html
I cannot begin to adequately express just how much a simple brochure on Palliative Care options would have meant to my family less than a month ago. Doesn't it just seem logical to have an information folder that physicians are required to distribute to cancer patients regarding "potential options" and "end of life care"?
It's difficult enough to digest this tragic news, perhaps add to that a physician with "bad bedside manners" and how much really is the traumatized human mind able to comprehend? Not everyone is aware, willing, able, etc. to dig up info. on their own as well, a simple folder of options would be such a comforting resource at that time.
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