End of LifeOctober 25, 2013

…so sayeth the proxy

By James Salwitz, MD

Yelling at the oncology nurses’ station disrupts focus, quality and healing.  Nonetheless, given the highly emotional world of cancer, raised voices are a daily event.  Shouting and emotive anger made me turn from the chart and my medical musings and I was not thrilled to find that the person causing the disruption was Gill, the Medical Proxy of one of my patients.

The issue leading to the disturbance was that one of the specialists had talked to the patient about the possibility of going on hospice.  Gill, her Proxy and friend of many years, strongly disagreed that an end-of-life conversation was appropriate, and was upset this discussion had happened in his absence.

Gill believed there were multiple reasonable alternatives and he was angry that the patient was now considering stopping treatment.  Thus, Gill was lambasting the nurse and demanding that a note be placed on the front of the chart to instruct all doctors that, in the future, communication was to be directed through him as Proxy. My first thought on learning about what had caused the brief chaos, was that there was confusion regarding the role and function of Proxy.

The Healthcare or Medical Proxy, also known as Medical Power of Attorney (POA), should be a vital part of everyone’s medical team.  The individual is appointed in writing, hopefully when a person feels well (maybe before they become a “patient”), often along with an Advanced Directive (A.D.) or Living Will.  The Proxy should be someone you trust to make critical medical decisions.  This can be a family member (i.e. spouse), adult child, parent, attorney or a friend.  If you do not assign someone as Proxy, then most states will appoint the nearest relative, which is not always someone you would trust to make the best decisions.

However, the events at the nursing station remind us that there are several rules and restrictions to the Proxy’s role, and it is vital to understand these concepts to avoid confusion.  The first is that the Proxy must speak in the patient’s voice.  This means that the POA must ignore, as much as humanly possible, their personal beliefs and goals, and instead consider “what the patient would say or do.”  If there is a major philosophical or religious conflict between patient and Proxy this can lead to poor, undesired or futile care, so if the person considering assuming a Proxy role can not comply with this rule, they should decline the responsibility. This is why it is important that the patient chooses his or her Proxy carefully, and communicates their desires.

Understanding this first concept, that the Proxy is the mouthpiece for the patient’s thoughts and ideas, and not their own, brings us immediately to the second core principle:  A Proxy has no power, no voice and no control at all, if the patient is still alert, oriented, able and willing to speak for themselves.  The Proxy may still be a close friend and advisor, but they have no legal standing if the patient is competent and wishes to make his or her own decisions. A POA cannot even discuss the case with doctors without the patient’s permission

The idea is that as long as a person is conscious and competent they have the right to make all medical decisions, either accepting or refusing medical care.*  If a patient loses consciousness then the Proxy speaks as the patient, which means that the patient does not lose the right to direct their own care even if they are in a coma.

Which gets us back to the tumult at the nurses’ station.  Gill meant well, he was trying to protect and help his friend, but he was confused regarding the Proxy’s role. First, the patient was still alert, interactive and involved, so as Proxy, Gill was powerless.  Second, even if the patient had been unconscious, it is likely that Gill was putting his own spin on the medical decisions regarding end-of-life care. He needed to step back and consider what his friend would say.  When I realized there was a gap between how the patient saw the medical plan and the Proxy’s opinion, I scheduled a meeting with the three of us to work out the issues.

A Healthcare Proxy is a powerful idea.  In addition to the protections of an Advance Directive, Living Will and POLST, which give specific, but limited, instructions, the Proxy guarantees that whatever happens each patient will have care directed as they would wish. In the chaotic world of medicine, it is vital to have an empowered advocate, and wonderful to know you will always be protected and your voice will be heard.

 

*Patients cannot legally demand care; only a doctor can offer or order care, it is a patient’s role to consent or reject it.

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11 Comments

  • Liz
    Sounds like a simple, straightforward document needs to be given to proxies each time when you have a near death hospitalized patient. It also sounds like an orientation/education program of some sort would be useful to educate proxies about both the boundaries of their "job" and the emotional toll, conflicts of interest, etc. that can result while doing their "job" - especially when a patient is close to death and hard decisions need to be made - especially if on one level they (the proxy) doesn't agree with some of them (patient wishes). Because we are a society that does not do death well this can make it harder to let go when someone is close to death. An unexpected conflict of interest (between the dying person and the proxy who loves the person) may be the outcome for the proxy. They need explicitly prepared for that as not everyone can cope with that - especially if they are blind sided by this. That kind of information/conflict of interest has played out in several different ways in my family - in favor of the wishes of the person (not always done easily) in some instances and not in favor of the (unwritten, but repeated for years) wishes of the person in others... hard feelings between family members over the situations... At least you responded rationally (and I presume compassionately). Not all places/people will do that. I watched someone be removed by security guards because he used swear words (after several attempts) to try to get some help for his wife during chemo (I asked about it and was told behavior outbursts would not be tolerated - I was then placed next to the woman when I had my chemo and she was clearly suffering and needed some sort of help), Someone else I know had her own outburst during chemo and was fired by her oncologist... It seems to me so many of the tragedies during cancer come not from the disease or its treatments rather from how poorly human beings can treat each other, the lack of compassion, the unwillingness of both some of the medical profession and some family members to deal with the emotional side of cancer, the expectation by some of the medical profession that the cancer patients stuff their distress and manage to cope successfully at all times... As medical professionals you have learned, one would hope, how to cope with this since it comes with the territory. Those of us not in that field are sometimes "doing this" for the first time and the learning curve is steep... emotions can overwhelm people on occasion and when that happens we are not always on our best behavior (I have been guilty here). For the medical professionals who have learned to cope with this in ways that include compassion to the "offender" - those patients are lucky. For those of us who have medical professionals who have not learned how to cope in ways that include helping patients and families even when they are not "on their best behavior"... well that is when some of the tragedy happens. Hope you can teach your medical students/residents to model your behavior and not to contribute to tragedy, if for no other reason than in my opinion the greater responsibility is on the professional to behave professionally. Hopefully though they will see that it is the compassionate, right, thing to do...way to act.
    Reply
    • D Someya Reed
      This is an absolutely excellent, balanced comment to this post, Liz.
      Reply
  • Mary
    I have a friend -not so close now-that I asked to be my proxy. She always said, "I have your back, girl friend. If you need help, call me." She wanted a copy of a blank DNR, and a blank copy of the advanced directives to take to a lawyer. I told her that it doesn't make her financially responsible for anything. That a proxy could be a Marine in Japan or Afghanistan, and be advised of the problem, e.g. I don't want to have tubes for over 3 days. I don't care to have oxygen for over 3 days. I have several reasons for that. I remember Dr. Salwitz writing about a pitiful patient that had her oxygen tubes sitting on her forehead, because the tubes caused nose bleeds. I've said several times that part of my nose was cut off-the side of the nostril. Beautiful job and doctors don't notice it until they try to stick that black thing up my nose for an exam. They have to contort and be pretty much upside down. I also have surgery scars inside my nose, and lots of the interior flesh was cut out. I carry Aquaphor with me and keep my nose slathered with it to keep it from drying out, and help catch pollen and other irritants. I knew that oxygen wasn't viable for me, before my ENT and radiology oncologist told me this. Then you add the fact that even though I used to SCUBA dive, when I'm out of it with pain or coming out of anesthesia, I fight oxygen and the nurses. I have other issues that probably would make me a bad patient. I was a math teacher at a gang infested high school. None of were comfortable with students behind us. I got stabbed in the back with a pencil. If the twit knew what he was doing, I could have been seriously injured or dead. It just drew blood-and I didn't catch hep, HIV, or anything. If I'm away from home, I have hostile reactions when touched on the back without any warning. I told her to just forget about it. When I had my babies, I was told that I was one of the clutziest and messiest patients around, and I get tangled up in tubes. I'm scared that the staff would get mad at me, and take it out on me. When it's my time, I just want to pass quickly. When my god calls me, I don't want meds, resuscitation,etc to bring me back to suffer more. My family and agent understand this, but I seem to be in a region where the social workers don't understand this. I've lived a full life, I've seen the good and the bad. I've been able to help others. I had 3 really good horses, I have 2 good hounds by my side now. I was riding in the fog-low cloud, and I was surrounded by a herd of mule deer. My children grew up to be intelligent and caring people. My husband loved me dearly for most of our marriage. How many people can say things like this?
    Reply
  • jill
    Very critical information to know. Thank you for the post. A radiation oncologist told me to say F--- Y-- to any nurse who caused problems..I was shocked...I read that this word helps if one is in extreme pain. Avoiding the need for loud or harsh language is the preferred approach.
    Reply
  • Mary
    My father was an Army artillery Sgt., my brother is a Marine, and my husband was a Bos'un mate. I can cuss in those languages and in several types of Spanish, German, French, and Vietnamese. I worked with horses and was a team roper in jackpot rodeos. Then I learned the newer gang curses at school. I try to keep my dignity and treat people the way I want to be treated. It's just that sometimes some people are like mules, and you have to get their attention. Usually a soft word turns away wrath, but there are some people everywhere that are on power trips.
    Reply
  • D Someya Reed
    There is one thing that Dr. Salwitz pointed out but not as explicitly as I think it should have been. And this is in no way diminishing his excellent, as usual, post. He said: "The idea is that as long as a person is conscious and competent they have the right to make all medical decisions, either accepting or refusing medical care.*" and "*Patients cannot legally demand care; only a doctor can offer or order care, it is a patient’s role to consent or reject it." Absolutely correct and every person accepting duties as a proxy needs to know this. This story, however, was over a hospice "conversation." That conversation alone neither extends your prognosis nor puts you any closer to death. It's nothing more than a conversation about an option that no one can force you to take and you can always refuse even if both your doctor and the hospice medical director agree that you fit the six month prognosis. For the hospice's medical director to even concur with your doctor's prognosis, you would have had to authorize your doctor to release your medical records to the hospice. If you refuse that, it's "game over" for the hospice. No one, legally, can make a six month terminal prognosis without seeing your medical records. However, an early conversation about hospice is never a bad thing. Certainly, and obviously in this story, there is an emotional side not unlike your diagnosis, not unlike the recommendation of chemotherapy, not unlike the recommendation of radiation. All of these are life-changing just as is going on hospice care. But as with all of the above it's your choice, not your doctor's and not your proxy's. If your doctor is being straight with you and you are being straight with your proxy, you both already know your long term prognosis. Why is the "early" hospice conversation a good thing? It gives you and your proxy time to think about hospice, not "have to" think about hospice. It gives YOU time to decide if it's what YOU want at some point and in no way different than deciding on a DNR, POST, advanced directive or even organ donation. Every one of these involves your death. Hospice can be no different than saying something like, "I love you Dr. Salwitz but rather than you "sticking me" every time I see you, I'd rather have you drop by the house, have a cup of coffee and show me if you really are as good a chess player as you say." *Note* - I just made that up and don't know if Dr. Salwitz even plays chess. Most importantly, It gives you time to check out hospices in your area should you have a choice of providers or the single hospice if that's all you have. You can find out what they should do vs. what they might do vs. what they actually do and formulate what you want and expect so if/when you choose hospice you will have everything in writing with the hospice before you sign on the dotted line. Then you, your proxy, your caregiver and the hospice will all have the same set of rules and expectations to follow. If the hospice doesn't agree, don't sign up. If the hospice doesn't perform, transfer to another and file a complaint or multiple complaints, if appropriate. If you can no longer make these decisions then it's up to your proxy who should now know all that you want.
    Reply
  • Mary
    I agree with you about the hospice. I don't know how often this happens or if it's just my area, but they wouldn't let me or my family do the hospice thing as you wisely suggest in your last 2 paragraphs. We were told that when I was ready for hospice, the tumor board would tell me. My oncologist would let me know. Death wasn't imminent for me, but I was diagnosed with a rare incurable cancer. The ACS standard treatment was to remove the right side of my face, including the nose, and bone. We just didn't understand how I was expected to live like that for a year or so. .I had to take a biker grandson up with me. to find out about it being a possible year. We went back to the original surgeon that did remove a strip cancer filled flesh. She saw my bone in the worst area. She has treated this before. The oncologists that wanted to ship me 2,000 miles away for the bone removal, and the social workers told me that I couldn't ask about hospice. Nobody even ran any blood tests to see if I was a decent surgery candidate. My primary care felt sorry for me and ran the blood tests. Sloan-Kettering and the ACS says this cancer in a nose can drip cells into your lungs, and you'll die in about 8 months. Nobody was in a hurry, when I asked the nurse navigator about lab work, she said the doctor didn't order any and walked off. I had successful radiation by a MD Anderson, Board Certified oncology radiologist, who felt that I would have excellent results because the bone was still cancer free. Does my chart say that? No, it says that I refused the recommended ACS treatment. My new oncologist is very nice. He says that what I say, what the original surgeon says, and what the radiologist says are consistent, but the conclusions are far different than what the tumor board heard and recommended. The original surgeon wanted to only remove my flesh and skin, part of my nose, and use a good matching skin cover and make me look like I had a good face lift. Whereas, the radiologist felt the radiation was best. I think that the clinic didn't want somebody up there with a highly visible cancer. i know- should've, would've, could've-all speculation- But considering that I might have had lung cancer in a few months, social workers were telling me that it might take months to send me to Texas and they'd get back to me, which nobody did. I think that I should've been able to check out the hospice thing because at that time my cancer was so theoretically unstable. I do know that all over my EHR-it says that I refused to follow the ACS treatment. It should say that I followed the advice of a Board Certified oncological radiologist. I do have a new oncologist. He asked me why I choose radiation. I explained about the lungs, lack of lab work or follow up. That surgery or radiation is only a temporary solution. Then I explained to him the step by step development of this cancer, and what is supposed to be down when. I handed him printouts from NIH, Sloan-Kettering, oncology research, etc. I highlighted my points. He said that he would have made the same choice. When it comes back- then the surgeons send a patient to radiation. By that time it's all over the place eating through bones. Meanwhile- the first thing that anybody sees on my records is; PATIENT REFUSES ACS STANDARD TREATMENT. It should say: Patient having alternative ACS radiation treatment by Board Certified oncologist.
    Reply
  • D Someya Reed
    I don’t understand why they would tell you these things. The tumor board is not a governing body and can only recommend treatment based upon multi-disciplinary discussion and hopefully consensus for best possible outcome for your specific case. They have no power to force you to accept any of their recommendations or deny you any accepted (not designated “experimental”) available care. That’s between you and your doctor even if your doctor is on the tumor board. Your insurance provider may take exception to the tumor board’s recommendations though should you choose a treatment they don’t want to or don’t commonly cover. The tumor board has no authority over hospice, either. Hospice is a Medicare controlled benefit generally available to anyone (regardless of Medicare eligibility) as long as one of your personal doctors and the hospice’s medical director both sign a statement that your prognosis commonly results in a remaining life span of 6 months or less. It doesn’t mean you will die or must die in 6 months or less just that death in this time frame is statistically more common in cases the same or similar to yours. No legitimate medical staff should deny you care or harass you simply because they disagree with your choices at least not without consequences detrimental to themselves. Their duty is to explain and offer you choices for best possible outcomes, comply with your chosen treatment(s) and defend your rights as patient. In contrast, however, are the facility’s Risk Management Dept and Risk Manager. Risk Management’s duty is not to you but to protect the facility/business from any negative consequences. If there is any kind of problem or potential problem regarding you, your proxy or your advocate, you can safely assume that they know about it. They, legally, cannot do anything to compromise your rights as patient but they can make life miserable for your proxy or advocate. This is usually accomplished by making proxies/advocates follow every obscure rule to the letter. Sometimes, I think, they do it in an attempt to convince your proxy/advocate that maybe they should convince you (the patient) that you would be better off seeking care elsewhere. If they denied you care or discharged you for any but a narrow range of valid reasons, this could be construed as patient abandonment. In our own case, when my wife died in the hospital and this is how I learned about Risk Management, the hospice interfered with and attempted to fully obstruct our family’s chosen funeral home from claiming my wife’s body. They made multiple calls the morning she died to the hospital’s on-duty nurse to get us to consent to their being present, which we refused. The hospice called again to get the hospital to lie about or withhold our room location from the funeral home, which the on-duty nurse refused. Finally, the hospice management called the on-duty nurse an additional two times to “insist” that my wife’s body not be released to anyone until they said so, which the on-duty nurse again (and rightfully) refused. The hospital’s risk manager knew about all this that was going on…protocol required the hospice’s actions to be reported…and attempted to downplay it. She refused for over a year, coming up with different hoops for me to jump through, to provide a statement from the on-duty nurse (preferably) or the hospital (at least) about the actions of the hospice to submit with my complaint to the State Licensing & Certification Dept. She finally relented after a year and conveniently outside the State statute of limitations for interfering in the disposition of human remains, a misdemeanor in CA. Even then, she claimed that the letter she would supply (in the form of her re-telling the testimony of the on-duty nurse) would be the only copy in existence and that they would neither replace it if lost nor keep a copy on file. She did everything except deny they ever wrote it. At this point, could anyone believe that the risk manager’s actions were in any way of benefit to or in protection of any patients in this hospital? I doubt it but there turned out to be more to the story. I learned that the hospital was creating a new “cancer center” and had been negotiating (and questionably appropriately) with this particular “local” independent/nonprofit hospice to be their “provider of choice” over the other two hospices covering the area which were both larger and one being an “evil for-profit” and the other part of a larger, competing hospital. But there’s more. During this same year, I had gone to see my wife’s oncologist to thank him for all he’d done for us and to tell him how special his actions had made my wife feel. He burst into tears, hugged me and said how sorry he was about all that had happened. He told me that after he signed the initial certification, the hospice never contacted him about anything and during the last portion of my wife’s life, he was away on vacation. A few months later, after jumping more hoops with the CDPH Licensing & Certification on my complaint, I thought it would be helpful if our oncologist would put into writing his statement of non-contact and the dates of his vacation. I left a hand-written request at his office next door to the hospital. I thought he was an independent practice but he was associated with the hospital and protocol required that my request be turned over to the risk manager. Our oncologist called me at home. He told me that he knew why I wanted the information but he couldn’t put anything in writing because if he did, he “would be fired.” I told him I didn’t want to cause him any trouble and thanked him for calling. No sooner had I set down the phone, it rang again. It was the hospital risk manager. She told me that our oncologist had just walked out of her office, very upset, after telling her that I was pestering him and he didn’t agree with what I was asking him for. I said, “That’s funny because I just got off the phone with him and he said that if he wrote down the information I requested, he would be fired.” Without missing a beat and having been caught in an absolute, bald-faced lie, the risk manager said, “Well he’s mistaken.” She then said that she had been getting multiple complaints through-out the hospital that I was pestering everyone who had ever cared for my wife. Another lie. She continued by saying that if I ever came in to the hospital again and asked anyone anything regarding my wife’s care or circumstances surrounding her final days, the police would be called and charges would be filed against me. At this time, I had only been in the hospital twice in the two years since my wife had died there. This is why I say that Risk Management is not your friend, not out for you (the patient) and only looking out for the interests of the hospital. I’m not saying they all would act like this one did but their job duties are not aligned with anything to be helpful to you as patient and definitely not your proxy or advocate. They have an obligation to respect you and honor your rights but not your proxy, advocate or even your family. This is the only group with whom you truly need to be concerned. For any other hospital staff, you do have legal and more immediate protections even if it’s only Adult Protective Services and your ombudsman. Incidentally, I’ve yet to find an ombudsman exclusive to hospice as no one that establishes these programs seems to believe that hospice is capable of doing anything wrong. I wish you nothing but the best and hope that all the unnecessary problems you’re encountering dissipate very soon.
    Reply
    • Mary
      Okay, This is an adequate size clinic with 8 oncologist-MD Anderson trained. I was assigned to the new boy in town-an idiot about 55-70. For some reason I got him. My PCP did not refer me to him, but I have Presbyterian SeniorCare. They advertise they are MD Anderson, but I contacted MD Anderson in Houston, Texas, and received letters that the oncology unit does not have anything to do with MD Anderson. The clinic began removing signs that it is a satellite MD Anderson clinic. While this helps incoming patients, it didn't do much to solve my problems. The radiation treatment center is the only MD Anderson clinic. It is strictly controlled, tells you on the front, which doctor to go to for a complaint, and he's my personal oncology radiologist-I shouldn't say this, but my grandson says its like meeting and talking to someone like Gary Grant or Rock Hudson. They also list the New Mexico state offices, federal offices, MD Anderson offices, and the AMA, national radiology offices to file a complaint. They have a little kitchen there, where they fix things like chocolate milk shakes, soft vitamin enriched custards, etc for patients that are loosing too much weight-and they either don't have a support system or they have very modest means-in other words poor. It doesn't take a lot of brain power to see why patients that have a health crisis and the families take them to the radiation unit. The whole staff is patient, caring, concerned. i think that they are like my grandmothers-they took each child aside, and told each child that they were the favorite grandchild. I thrived with this care. The administrative head of the oncology unit uses 2 names-makes it harder to track her down. Presbyterian in Albuquerque has a web site that doesn't list any administrators, any doctors that head clinics, and boards, nobody. They used to be proud of being in Presbyterian. When I called the insurance plan reps about the oncology unit-I wanted to get a different oncologist and Nurse navigator, I was told that was an MD Anderson oncology clinic problem, go to the clinic desk, and they'd have the paperwork to do this. We had already been at the desk. The desk would give me a business card and a name to contact myself. I contacted them by phone and Email. At first, they said that the social workers and nurse navigators did this, contact my Nurse navigator. Then I ended up having complaints with my Nurse navigator. I have over a dozen business cards in a big coffee cup. At first, the desk told me that they'd contact administration, and I'd get a new oncologist, no problem, someone would get back to me. Then the receptionist would say, "Hi Mary, is everything straightened out?" They'd look and see that nothing had changed. They'd make phone calls, and say nobody is available, they're at a meeting, they are on vacation. here, he's a card, maybe this person will help you." Once I had an appointment, and the person wasn't even there. When I talked to people on the phone I was told that I obviously had emotional-mental problems. I even got an Email where the person said that only a person with spiritual problems would be fighting with so many people and refusing to go into counseling. Most of the Emails said that "Don't worry. I'll talk to someone about this. I'll get back to you in a few days." I never heard from them until I Emailed, called them. usually they said, if you come up Wed morning, I can fit you in. I was never fit in, never saw anyone but the receptionist that began sharing snacks with me, and holding my hand, while they made more phone calls. I finally called up MD Anderson in Houston, TX. and said that I'm finishing radiation in a few days, and I don't have an oncologist. I don't have an appointment with anybody for the necessary follow up, this has reached the point where I can sue you because your name is in the clinic, I can sue Presbyterian, the MD Anderson oncologist that I hated, and file charges with the state, the county AMA, and contact the TV news. My husband was in Texas, and we'd file complaints in Austin. After being on hold for a long time. I was transferred to the woman with 2 names. I told her that I had a rare incurable cancer on my face. I was finishing radiation in a few days, and I did not have a doctor, and that I'd been requesting one for over 8 weeks. I asked her right off why she used 2 names. I told her that I had left messages on her voice mail, she didn't have an Email account listed where I could have contacted her, and that I had gone up and sat for hours to see her and her alter ego. I explained the reasons why I refused to return to the original doctor. He recommended bone and tissue removal of my nose, eye, and the right side of my face. He said that we needed to hurry, but he never ran any lab work-the EHR would confirm that my PCP ordered the lab to see if I had clotting issues, anemia, hep, HIV, kidney problems, etc. I never heard from anybody about going to Houston-a Nurse Navigator problem, that nobody would tell me how such a wound would be cared for. He patronized me and called me a little lady, and said that I worried too much. women did things like that. This was the same doctor that couldn't answer a binary question about using a small needle to start an IV on an elderly patient with collapsing veins. I was too detail oriented. On the second visit, he bragged that he changed the day and time of the tumor board, so the radiologists wouldn't show up, because the radiologist would ruin his plans. I told her that she could check with the head radiologist that he showed up for the tumor board, but it was convened a day earlier. I told her that he told me one surgery, my biker grandson asked -one surgery or more surgeries? More. My grandson made him through fear admit that it would take a year after the last surgery before I received a prosthetic face. That he refused to say how the wound would be cared for. I asked her, "What will happen to my body while I'm waiting for a prosthetic face?" I asked every person I met or talked to-receptionists, that doctor, nurse navigators, counselors and social workers. She was very kind to me, and told me that I'd definately get a new doctor and have an appointment in less than a week. I thanked her. I waited a week, and didn't hear from anybody. I went up to the desk again. I said that I'd finish radiation in 2 days. I did not have a doctor. I was promised that I would have a new oncologist and an appointment by this date. Did I have a doctor or not? This is a binary question-Yes or No. They went to back room. They came back and said that I had a new doctor-and said- Next to the poor person behind me. I said-Excuse me, but it might be nice to have the name of my doctor. They went to the back room and found out. Then they said- What do you want now? I said that I wanted an appointment. I was fit in the next day. I asked my new doctor about hospice. He said that it was run by the social workers, because Presbyterian has it. The doctors make recommendations, but administrators and the support staff make.the decisions. That's why it's so hard to have on my chart that I refuse to follow ACS standards of care. My oncologist said that he'd remove it if he legally could. He did contact the radiologist to why they didn't show up for the tumor board and entered on my chart that the tumor board didn't meet ACS standards, because the radiologists were excluded. May 5, I was bit by a dog. My son had me in the ER in 15 minutes. Cancer patients and radiation exposure patients can get an infection called pasteurella multocida. There's a specific antibiotic and medical procedure for this. I told them that I was a cancer patient and I finished radiation in mid-Feb. They didn't give me a strong enough dose of the antibiotic. I told them the bone was scraped by the teeth. This was on the weekend. I had an infection by Monday, went into my PCP and was admitted to the Downtown main hospital. I asked -Why not stay at the hospital there-it was 200 ft. away. He got a funny look on his face, and said that I'd get better care downtown. I was treated like a queen- all of the doctors and nurses were so kind. After my post-radiation Cat Scan with contrast, I returned to the new oncologist for the follow up. One of the regular nurses saw the hospitalization on my chart and asked why I went downtown, when they had a ward for injured cancer patients right there. My doctor didn't make a comment one way or the other than asking if I got good care downtown. when I said the best- he said Good. I have atypical BCC. Normally a person gets a odd looking thing. The doctor cuts it off, and that's the end of it about 98-99% of the time. i had mine for at least 25 years. It looked like a little zit, because it buried itself-sort of like the tip of an iceberg. I went to military doctors, civilian doctors, primary care, flight surgeons, dermatologist, plastic surgeons, and I even volunteered to sit naked for medical school dermatologists and let them to look me over. I asked about the zit each time. When it was taken out in Sept.2012, the surgeon said- see a cyst-nothing to worry about. before it was time to remove the stitches, I had visible cancer tumors. It gets so large, and it moves to the surrounding pores, attach themselves to the root of a hair and grow. That's stage 2. It buries itself, eats and drills through the bones. All of the oncologists say that it is one of the most painful and slowest moving cancers. It does not respond to chemo at all. Heat, radiation, and surgery activates it-makes new one pop up. They say that I have the worst site- because it will drill through the roof of my mouth, and will drill into my brain until I die from pain. My bone wasn't involved, and the system wouldn't let me get care from the surgeon that did the biopsies. She would have just taken the flesh and skin and throw in a face lift on the other side. She does it for private insurance-cancer and accident victims. Firemen get this a lot. The other form of this cancer is to get it on the chest or shoulder, and a person will have hundreds on their back or chest. I know a man in Mobile that has them on his chest and back, so does his 12 year old son. Anyway for the head, the ACS says to have bone-flesh-skin removal, wait until they stop popping up. get plastic surgery-prosthetics. have maybe 10 years. then it comes back worse, more surgery-which they say doesn't work. Then chemo-in the hopes that something new might work-so far it doesn't work, then radiation-then you die in pain. My grandson and I met a man at Home Depot that was just trying to get through the pain. His surgery didn't last 4 years-and that includes the 4 surgeries, waiting a year and getting plastic surgery. it was by his ear-so his ear and surrounding bone was removed. My particular place is called Fisherman's cancer, because it's caused by the reflection of UV rays from water and snow. Hats aren't any protection from the UV rays. I am guilty of fishing from Canada to Mexico, in the Pacific, Atlantic, and Gulf Coast. I've fished in Southern ponds, the Missouri, Mississippi, Rio Grande, Pecos, and Colorado rivers. I can't remember the names of the rivers in the northwest. I've fished and surfed in Hawaii, etc. I got and get lectures on that I didn't take care of myself, never mind the laws of physics about the reflection of light rays. That I'm stupid for not wearing hats and sunscreen. When I was a kid and until the 1990s, we basically used coconut oil to protect the skin. A person could buy fancy skin protection at a dermatologist-and it would have been rated as a 0 or 1 spf. My brother was a marine officer. They entered on his chart that he's Irish. he's had close to half of a dozen removed, but he stays in stage 1. So, I'm in a system where the support staff thinks I'm an idiot-a liar and and probably have other things going on with them. I have a very good team of doctors now, ENT, dermatologist, etc. oncologist-when he heard- and saw the print outs that I gave him, he said- If you go through all of that for only a few good years, and you end up with radiation, you might as well do the radiation first-I would do that. The next best hospital here-I had 3 friends-rancher's wife-went to finishing school and knew Jackie O-and cowboys that went through the initial treatment there, had remission for a few years. They complained how cruel the staff was. The place is always being sued-and the patients win. Anyway- they all refused to return, and committed suicide in different ways. I just hope that I don't lose the doctors that I have. I'm 71, the chances are that I could die from something else.
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    • Mary
      Obviously the hospice director is a social worker. I think risk management is a large part of this-They were talking about a possible million dollar treatment. I know that my daughter, a speech therapist, estimated the physical therapy to keep my throat open after surgery would run into the hundreds of thousands of dollars. She used to do this at the VA for stroke victims. She had 3 that swallowed their tongues. One died. You know how you can gag if you stick your finger down your throat. If you do that enough, you stop gagging, and you can swallow your tongue. When her contract with the VA was up, my daughter refused to do that. She'd rather work with disturbed teenagers. That's one reason it is so expensive. I think that doctor just wanted me to disappear-who knows
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