Cancer Chaos

With all due respect to both you and your profession (which I hold in both very high regard and expectation), I disagree that either compassion or understanding are in any way tied to staffing levels. I don’t believe that compassion and understanding are something you “generally try” (to do) but rather do (as well you can) or you’re just not doing it. In my own experience, I’ve seen both extremes of the compassion/understanding spectrum and everything in-between. I’ve had a doctor, upon first look at my wife at our first appointment (no exam, no test results) say, “You have ovarian cancer. You are going to die. I’m going to step out in the hall for 5 minutes so you can discuss whether to pursue treatment or not.” Then he left the room. I’ve had another doctor (a surgeon) go far beyond the normal duty to his patients; calling to check on my wife from hospital, from his home after hours, during breaks at conferences and lectures (even those he was presenting), even while on vacation in Hawaii. This was during her care in hospital and all through her recovery. I’ve had nurses who stopped in to check on my wife in hospital both before and after their 12-hour shifts. On breaks; always asking if she’d like a popsicle, jell-o or ice water. These same nurses made sure I always had a cot next to her bed even though I assured them the chair was fine. Many still knew her by name sometimes over a year between re-hospitalizations and sweetly commented how they’d never seen two people so connected and in love as we, finding it hard to believe we’d been together nearly 20 years. I’ve seen horror and terror in my wife’s eyes when a hospice nurse came into our home informing us that after 30 days under their “care” our original contract had been invalidated by the hospice’s nursing director, executive director and medical director (without notice or contact of our attending physician). That she had been ordered “not to lift a finger to help (my wife) in any way unless and until both of us signed the new contract” (a felony violation of contract law in our state). This new contract allowed any staff nurse to do anything they felt appropriate and neither we nor any family member could refuse or interfere “even in the slightest.” It stated that “any failure to comply can and will result in…physician being notified, hospice services being discontinued (even though they’d just done that and)…being discharged.” We were given one hour to read, discuss and decide while the nurse and social worker sat and watched us. This action was in response to my wife’s 2nd refusal in a 7 day period to be turned fully on her side so the nurse could merely see (neither touch nor treat) her back which the hospice claimed (her refusal) violated their Plan of Care (the one they refused to allow us to have a copy of or even see because it was a “living document”). As further enticement for us to sign, the nurse held a chemotherapy port flushing kit above my wife stating that she would gladly flush her overdue and backed up port (her left arm painfully swollen 2-3 times its normal size) the moment we both signed the papers or else she would exit our home, my wife would be immediately discharged and all equipment removed. When I asked how was my wife to sign the contract, the nurse merely shrugged her shoulders and tapped her watch. My wife was fully quadriplegic. My wife had entered into hospice care as a metastatic breast cancer patient. She had endometriosis, 5 surgeries in the prior year (including mastectomy and a complete hysterectomy). Her legs were no longer weight bearing as they were severed from her cancer engulfed hips by separation of both femoral necks. Bone tumors cracking open her spine at the T12 vertebrae and spinal cord compression sealed her fate to paraplegia with imminent spinal cord compression at the C7 vertebrae which would result in full paralysis. She also had over 15 tumors in each lung (radiology stopped counting at that point…inoperable), a large tumor mass on the outside of her right lung, bone tumors throughout her body except her head and neck along with cushing’s disease. During a 7 day window from days 22 through 28 she experienced severe pain (only when moved) as her spine was cracked open and cord compression occurred at C7. The hospice nursing director said that she would not accept a patient refusal more than once in any 7 day period and said to me in person, “Your wife will do what we ask and I don’t care how much pain she’s in.” The hospice medical director said that he knew all that his staff was doing and had approved every bit of it. Turned out the medical director was the same oncologist my wife had rejected 2 years prior when he told us that she should accept his severe chemo regimen because she should realize “how much we will learn from your death.” He acknowledged that he remembered us and my wife’s refusal of him. It was unethical for him to be involved in any decision to expel her. I disagree that compassionate doctors are a rarity unless you are referring only to those that go way beyond the call of duty. I think that everyone in the medical field (and many other professions) could benefit from cultivating compassion and understanding. None of this was intended to offend and I hope no one takes it that way. I couldn’t think of any other way to explain this without expressing details that I live with every single day.

I also think some of them need told HOW to be compassionate. The "emotional IQ" of some doctors is pretty low (just like in any other profession) and they need more help translating "compassion" into behaviors.