It's been a long day and I need to start early in the morning, but I wanted to write about something that happened today at Stanford. I've been trying to figure out how to tell the story and state the need in an appropriate way.
Donna has been very public about her illness all along. She wisely and readily sought the prayers and support of her community, and God heard and answered those prayers in a mighty way. So, it is not Donna I am concerned about, but those who participate in her care.
Fifty two times a year, a large bore needle must be inserted in a vein so Donna's blood can undergo a process called apheresis. It takes several hours, but time is not the real issue... Maintaining those veins in usable condition is vitally important. A local anesthetic is used because of the size of the canula which must enter the vein.
After enduring painful and destructive punctures from one of the nurses on several visits, Donna reluctantly asked that this person not be assigned to her again. I was pleased and proud, because it is difficult for patients or family to make such a request... often because of the response they might get.
Once when Donna was about to undergo a bone marrow draw from her hip, I noted her doctor was not giving her a local to deaden the area. This is an
extremely painful procedure, so I told the doctor to stop and step into the hall with me. At once he was displeased, but I persisted and he came. I didn't want to say anything in front of the nurses and other family members, but I respectfully reminded him that Donna needed anesthetic. His comment was, "It's over in an instant, and the anesthetic will take several minutes to take effect." I told him I was more concerned about Donna's comfort than his time, and he should share that sentiment.
Physicians take and oath, the Hypocratic Oath (so called for Hypocrates), in which they pledge (in part) to "above all, do no harm." Unnecessary pain is
harmful, and there is no excuse for it! I was horrified to learn that until I intervened, Donna had never received a local to mitigate this tortuous test. Needless to say, she didn't even know she could have it easier. She knows now, and speaks up for herself when needed.
Back to today's incident: Donna needed a prescription for one of her meds. They write it for one month at a time since these are narcotics. Well and good, but without going into all the details, one of the care givers (a nurse-practitioner, I believe) refused to give it to her, then made an issue of telling Donna to go to her "local" doctor. When Donna tried to explain her reasons for getting the prescription there, she was told to shut up and listen! This woman then turned to me and said, "Well, she lives three hours away!" Turning on her heel, she left the room. Donna was in tears.
Since Stanford is treating her for the Host vs. Graft disease that causes the pain and since they also put her on these meds, that's who should oversee dosages, etc. Ultimately she got her prescription, but I feel it was outrageous that this person who is supposed to be caring for the needs of patients, encouraging and supporting them would be so rude and uncaring, downright mean spirited!
"Above all, do no harm..." Harsh words inflict new wounds... Something we all need to remember.
I am blessed with wonderful doctors, but I've been "treated" by medicos who had forgotten The Oath. God gave me a body and the responsibility to take care of it. If my body or emotions are being illtreated, I say something. I hope you do, too. And I hope you won't be shy about speaking up if a loved one is not being treated well.
Donna was ill all afternoon. Being so upset probably played a part. When I dropped her off at her house, she initiated a prayer for the woman who had been so callous with her. I was not surprised.