Some of my readers seem to have the same mental concept as some of the legislators that pass many of the laws that are impaling many in the chronic pain community.
PALLIATIVE CARE is a process not a structure.
Yes palliative care is normally associated with cancer care and end of life Hospice, but it is not a process restricted to Hospice or caring for terminal or end of life pts.
Hospice is a structure that is regulated by – who else – the government. Normally, when a person enters Hospice.. their doc will confirm (guess) that the pt has less than 6 months to live. In the case of a pt on Medicare/Medicaid, they relinquish their Medicare/Medicaid and the Hospice organization gets paid – normally a per diem amount – to provide all the services that the pt needs for the balance of their life.
Their goal is to “comfort” both the pt and their family and make the pt comfortable and do nothing that will extend their life.. Again it is about saving money for the system… paying for heroic procedures that may add hours or days to the pt’s life.
If you read the WHO’s definition of palliative care in this post what would happen if ?
It is about helping a pt and the family deal with the pt’s life threatening disease… be that diabetes, hypertension, heart failure… whatever disease that if not properly addressed could impact both the pt’s quality of life and life expectancy.
How many pts’ quality of life have been compromised by the reduction or elimination of their pain medication therapy ? How many chronic pain pts have committed suicide because their medication was reduced or eliminated.
Is providing a pt with physical therapy, a cane, walker or wheelchair to improve the pt’s quality of life, part of palliative care ?
Filed under: General Problems
https://www.effectivehealthcare.ahrq.gov/ehc/products/639/2286/palliative-care-tools-draft-report-160824.pdf
as Hubby’s health issues remain uncertain, (the potential for healing or remission of systems damaged due to floxing) are an unknown. We through the Palliative care process want to add to the knowledge base and research needed to aid the victims of these merciless drugs. As well as info to teach the gatekeepers of these drugs and their improper use. Hospice is also a process that is ambiguous in the length and breadth needed. The only certainty we have is that God is in charge, and that He honors faith, and FAITH we have.
Pallative care is on a continuum. People seem to forget that. And some folks do “graduate” from Pallative care…
Recently hubby (of less than 5 yrs, Marvie, as I call him) and I decided to consider going the Palliative Care/Hospice route for his care. Approximately 18 mos ago Marv, had been floxed with a FQ antibiotic. This happened while he was needlessly hospitalized for a presumed COPD exacerbation. (Had been DX’d as mild to moderate earlier that year.) He did not have an exacerbation, did not have any bacteria show in any of the many blood cultures taken, nor was there any signs of pnuemonia or new findings on Xrays. He had a malfunctioning portable O2 concentrator. The hospitalist did not listen, went into his ritual and our lives have been forever altered. The doctor had ordered IV anti-biotics, (Levaquin it said on the bag, no the doctor did not tell us what it was or worse what it could do to him).The DR also initiated prednisone, a cortico steroid be administered daily as well. Marvie is/was over 65 yrs of age. All of these factors I mention here since they were considered important to consider in the prescribing of these deadly drugs. Fluoroquinolones were made to fight anthrax and were used even as a Chemo therapy drug, since it can and does change the bodies cellular structure. The mitochondrial DNA is changed, soft tissues can’t hold up. Tendons, ligaments, nerve endings, neurons all give way, rupture, tear, weaken and refuse to heal. At least for Marvie.
This negligent, incompetent unnecessary treatment, took an active pilot, skydiver, cross country skiier, motorcycle riding lover of the outdoors and put him in bed. Unable to bear weight on his legs due to the bilateral ruptured achilles tendons, the rotator cuff tears, the swollen arms, wrists, calf wasting, spine popping painful, for more than a year. A mild to moderate case of COPD now became very severe and developed into chronic respiratory failure, among other things. His pulmonary team, orthopedics, neuro’s, pain specialists are all at a loss as to how to help any more. So hospice was brought up. I am a long time patient advocate, warrior and mistruster of all things medical due to many life experiences, so I kicked it into high gear. My research returned information on Palliative care. Seemed reasonable to consider for us since the potential for more damage to his quality of life seemed a strong possibility in todays screw the patient save the doctors and Big pharma first, culture.
Thank you For this info, let’s fight on, together we have a chance.
forcryingoutloud….