Bill Posted July 7, 2006 Share Posted July 7, 2006 Thank you for recognizing me as a strong advocate for my wife. To know this helps ease the pain of losing her. It was time well spent. Every time that my wife Etsuko got down on herself for causing this catastrophic mess I was quick to remind her that the seemingly endless collateral damage created by the behavior of various medical and non-medical participants ( incl. family, neighbors, friends, etc. ~ yes Peggy, no ham sandwich here either ) was the bigger problem, out of her control, and that these issues can't and shouldn't be laid on her shoulders. For the last two years of my wife's life I spent entirely too much time having to educate, debate and battle healthcare providers ( HCPs ) and insurance issues. There are a few exceptions, but for the most part my wife was treated by a ( fragmented ) group of HCPs and institutions that knew little more than the bare basics about lung cancer and cancer generally. I had countless debates with doctors and a few nurses over drugs and related tx that they had little or no knowledge of beyond what they could extract from the manufacturer's professional literature ( LOL ! ). Far too often these practitioners would be quick to blame the cancer for most any health or tx issue that would arrise. For instance, my wife passed away with a lingering question about a right lung " mass ". Initially assumed to be a cancerous mass, and handed off to others as such, but not so according to a P/M biopsy. Peggy and I, and as I recall Sue, posted on this subject a couple of months ago so I won't go over it again. IMO, it's counter-productive and it's indicative of poor quality care for treating physicians to use the cancer as an all-purpose scapegoat to explain away issues instead of digging deeper for the real root cause. I dealt with only one doctor ( rad onc ) that spared me the smoke blowing and wasn't afraid to answer my question(s) with a simple " I DON'T KNOW " if he didn't know. In my wife's case there was alot of guessing, speculating and smoke blowing mainly, IMO, in an attempt to protect those fragile egos. Much to their dismay, I would call them on it and it made me a very unpopular caregiver / advocate. Mainly because my quest for answers, and not accepting smoke, forced many HCPs into revealing just how little they actually know about lung cancer. My questions were asked in an honest effort to help with my wife's battle with cancer. Not designed to reveal these individuals as know-nothing idiots. But, most of the time the HCP ended up looking more like just that. Lastly, medical staff ( including insurance ) attitude about late stage cancer patients and tx needs to change. This is esp. important for lung cancer patients as a majority aren't dx'd till late stage. Too much attention and commentary directed at warehousing and questioning tx and care decisions. Basically, a throw-away $ mentality about late stage cancer patients. I had a very revealing and candid conversation with a nursing home rep. who was attempting to secure approval for an extention to Etsuko's last nursing home stay. The conversation quickly turned to money and, despite Etsuko's very poor condition, no further extention was approved. When I explained that this decision made no sense financially as Etsuko would promptly end up hospitalized at much greater expense the rep. agreed, smiled and said this is typical bureaucratic thinking. And, this outcome is precisely what happened. THE BEST SINGLE PIECE OF ADVICE THAT I CAN GIVE CAREGIVERS AND PATIENTS IS TO BE A STRONG ADVOCATE. THE SQUEEKY WHEEL GETS THE GREASE. IT'S NOT A POPULARITY CONTEST SO DIVORCE THAT CONCERN FROM YOUR THINKING. THIS IS A VICIOUS BATTLE AGAINST A DISEASE FROM HELL. MAYBE A SOFTER PERSONALITY CAN GET EQUIVALENT RESULTS AS I DID WITHOUT BRUISING SO MANY EGOS. BUT, YOU MUST BE ASSERTIVE AND PERSISTENT AND, IF NECESSARY, READY TO GO TO THE MAT. IF YOU COME ACROSS WIMPY AND EASILY INTIMIDATED YOU'LL END UP BEING MINIMIZED AND TREATED AS A DOORMAT TO THE PATIENT'S DETRIMENT. GOOD LUCK BILL Quote Link to comment Share on other sites More sharing options...
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