For PapAmore...Are You Familiar With Palliative Care?
I want to make a difference for my Dad...
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.
I can't change the whole world, but when I have seen my Hero tragically inflicted by the cruel, senseless lack of what should be a required (seemingly, sharing hospice and palliative care resources is currently not mandatory, or so we have been led to believe) distribution of a simple brochure entailing information...that is something easily remedied, imo...
The goal of palliative care is to prevent and relieve suffering and to ensure the best quality of life for patients with serious illness. It is offered simultaneously with all other appropriate medical treatment.
Letter sent out, Please Copy/Paste, Thank-You!
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 entire Family) was left without ANY 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.
Thank You so much for your time and for all that you do...
Please Help Make A Positive Change...For PapAmore...
5 comments:
I'm with ya, buddy!
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.
honey, i agree with you. I am so surprised, and sad, that hospice/painrelief care was not mentioned to your family.
Sara..I am so sorry your father didn't even recieve pain meds.My Minnie was lucky I guess.Both her Primary and Neurologist mentioned hospice and they had been giving her pain meds! When the hospital told me there was nothing more they could do and were discharging her in 3hrs..I was livid.THEN they told me they had already made arrangements for the hospital equipment and for hospice to come that afternoon.We were assigned a nurse who came by 2-3 times a week and an aid..monday thru friday..i hr.a day.It was supposed to be increased in about 1 1/2 weeks.Minnie had bed sores which a nurse who came 1 time a week before she was last hospitalised had said it was "Diaper Rash" It was bed sores from not being turned often enough.I daid the best I could and used several ointments the nurse had told me to allply but it wasn't working.When the hospice nurse came that first afternoon ,she told me what it was and to keep it uncovered.The very next day when she came to check Minnie,the bed sores were getting better!!It became to much for Minnie's daughters who also worked and me to properly take care of her so we told the nurse about putting her in the local residence.Minnie was there the very next day !!No where have I ever seen such compitent,careing and truly loving people in my life.Minnie just loved the nurses and aids.Although she had stopped eating except for some jello,the chef durned out to be a cousin of hers and looked in on her every day.They even let me stay overnight and put a special recliner next to minnie's bed something I did 3 times.The bottom line is..in my area of the country,information on palliative care and hospice are just rountienly given out by most Dr.s and Hospitals.Sara..you have to make you voice heard in your part of the country..AND I KNOW YOU CAN :)I personaly,if not sued,would have at least brought your cancer Dr. up before the state medical board.Again,Sara,I am so sorry your dad didn't benifit from hospice's wonderful care.GOD BLESS YOU..I do.."BIG HUGS..ALWAYS"..john
BTW Sara..You sure do leave a mark when you start something :) Tell me..DO YOU EVER SLEEP ?? With Love..BIG HUGS..ALWAYS"..john
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