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Not only the paperwork burden, but also the burden of “EHR Meaningful Use” as mandated under PPACA (ACA/Obamacare). I had formulated a tremendously useful structured interview and examination format that I used in my clinic; many patients said that the 20–30 minutes I spent with each new patient was the most comprehensive medical history and examination they had ever had. Whenever I went on vacation and hired a locum tenens (temp) doctor, they often praised my system and asked for copies of the forms so they could implement them when they had practices of their own.Once “Meaningful Use” was required, I was excited to streamline my systems still further and I eagerly started to try out different types of Electronic Medical Record software. Of course, under Obamacare, I could only use software that had been approved by CMS. I tried four different systems in six years. To my dismay, the software was full of bugs and complicated, unnecessary steps, and accessing patient information and records of prior visits was consistently difficult and unintuitive. Literally thousands of hours were required on my part and my staff’s to accomplish the conversion of patient records into each system. The software and equipment required to run it cost me, all told, over $100,000. The quality of care I provided necessarily deteriorated.And the worst part? The EMR requirement was supposed to provide for instant interoperability between different clinics, but the programs could only transmit patient demographics and coded diagnoses between systems. To send or receive patient records, we had to print them out in PDF or on paper, which often ran hundreds of pages because of the way the software stored each record, and then either burn a disc, physically hand the paper records to the patient, or transmit them via fax. This last is because old-fashioned telephone-line faxes are okay under HIPAA, but transmitting a password-protected PDF is not. The idiocy of regulations!As I developed progressive inflammatory arthritis in my hands, the hands-on care I was providing to my patients began to deteriorate. I might have hired young chiropractors with intact hands and taught them my systems, but the computerized medical records were causing the mental services I provided as a chiropractic physician to deteriorate in quality as well. And I was spending more and more time filling out forms and talking on the phone to clerical personnel at insurance companies, justifying treatment plans and MRI and CT scans for patients who needed them.Sadly for me, my personal medical physician was undergoing the same sort of nightmare deterioration of her clinical systems due to EMR requirements, and that’s a big part of the reason my inflammatory arthritis was misdiagnosed until the damage was already well advanced. I did have good long-term disability insurance coverage, so I was able to retire at a relatively young age and pursue a writing career, but I would far rather have continued to practice excellent chiropractic medicine well into old age.

A couple of them, all related to my very …complicated pregnancy history. I don’t tell my full story to anyone that hasn’t had children yet, so I will be only giving details required to answer the question.Pregnancy number one. I was married about 7 months ago, and was about 7ish months pregnant. I was at a store that was also a hangout for young folk who played D&D on a Saturday, when the baby, who had been moving quite regularly for a good while, suddenly gave a huge massive kick, and then went still. I called the doctor who said I was overreacting, but come in on Monday if there was still no movement. On Monday, he determined that the baby was dead. He said to be ready to come back to the hospital at any time, as the baby would deliver soon. Fast forward two weeks, baby still not delivered. I go in for the check, still very pregnant, and now ill with a fever and other unpleasant things. The nurse is just as chipper as she can be, and obviously did not look at my file, because she gave me a big ol’ smile and said, “OH, when are you due? It must be pretty soon… You must be excited.” Now having been walking around for 2 weeks in my condition, I had had SO many people who felt the right to comment/touch/etc, that I had lost a lot of patience. I replied abruptly, “she’s dead.” Nurse turned white, and ushered me away from the other mothers to be as fast as she could.Years later after several more failed pregnancies, I was going to a new doctor. I had filled out a form with all my medical history, and she was asking about different parts. Then she got to my pregnancy history and said, “so how many abortions have you had?” I was shocked, and said “none.” She looked back at my paperwork, and said, “but it says here you’ve had…” I interrupted, “I’ve had one stillborn, (and numbers of other ways to end a pregnancy, none of which were by my choice.) And then I bust into tears. (At the time, I was not rabidly prolife nor am I rabid now, although I am prolife now and was not then, but my history has a major impact on that) And I knew that the proper medical term for a lost pregnancy, by choice or not, was abortion, but that is NOT what you want to say to someone with my history. Doctor seemed oblivious, but the nurse that was in the room looked so embarrassed. Needless to say, I had another “new doctor” visit not long after that.

a few times come to mind over the ten years as a registered nurse . There are times I have politely disagreed with a doctor and entered into a discussion about and we have been able to both explain our side and reach an agreement. It is a fine line I suppose / as a student nurse I was trained to question and understand and to use my brain and conscience to advocate for my patient. So I certainly wouldn’t blindly follow any orders. But at the same time there may be a reason the doctor asks something that I don’t know about - which is where communication is so important and I have found most doctors happy to listen to my objections or concerns and explain their reasoning. Some times it’s a matter of weighing risks and it’s not an exact science. There’s been times I have disagreed and perhaps been in the wrong. There’s times I have done something reluctantly I felt was wrong , and times I followed an order and it still haunts me to this day as I feel I shouldn’t have. I haven’t thought about my nursing experience in a long time. One time I felt I wanted to write a book. But because of confidentiality and because I don’t want to scare people from getting help from nurses and doctors I was put off that idea. Doctors and nurses are human and yes there’s errors in judgement and there’s also times the law doesn’t allow for doing the right thing. But even though sometimes things happen that aren’t right , I believe there are people out there advocating for the patients and learning from the mistakes.there is much more good that happens than bad. But the bad tends to stick in my mind I suppose.Things are coming to mind as I write this that I felt I had forgotten. The one time I clearly remember refusing a doctor order It was a night shift and I was the senior nurse (I had been nursing approx two years and some of that was in aged care so I was not very experienced in acute care. ) we had an elderly gentleman with many problems. He had end stage bone cancer as well as dementia. He no longer spoke English and his family said even in his native language he didn’t make much sense. The patient had come in from an aged care facility. They had been forced to transfer him to the emergency room in the middle of the night as they had no palliative care orders or not for resus , and as his breathing deteriorated they had to call the ambulance as dictated by legislation at the time in that state.(This happened often in aged care. When I worked there the ambulance would arrive and shout at me for wasting time and resources with a clearly dying person. I agree with them the person would be better off with palliative care in their own bed and family around. But the law doesn’t allow a nurse to make that call. It’s a bad system. )This hospital did not permit nurses to have end of life or palliative discussions with patients or family. I watched a young Intern talk to the daughter of this man and say to her “well he’s pretty sick. You don’t want us to do anything for him right ?”The daughter had come from interstate hadn’t seen her father for weeks and wasn’t aware his deterioration or prognosis. She felt put on the spot and tried to ask for more information. The Intern told her “sometimes it’s better to let people go.” The daughter replied she and her father were catholic and valued life. The doctor said “You don’t want to send him to Intensive care and waste all those resources. I am catholic too but in my job I’ve seen much suffering it makes me in favour of euthanasia”. And the daughter after hearing the word euthanasia immediately insisted her father be treated fully.Being a new nurse I understand this intern not being able to properly have this talk he was likely nervous and it was overnight he may have been on call for days etc so I’m not making a judgement on him. But to the daughter this sounded cold. And soon as he used the word “euthanasia” - which was not what this case was about - it was about good palliative care - the daughter became anxious. She immediately replied they were catholic and she needed to talk to her priest. On Monday. This was Friday. No matter what treatment the man received he was unlikely to live until Monday. But the doctor walked away - leaving a very upset family member and no palliative orders. As the paperwork stood this man was for full active measures including resus and met calls. However he did have pain relief charted and as he was moaning and displaying other non verbal signs of discomfort I administered pain relief to him. His daughter was happy with this as she didn’t want him in pain. And I explained it may depress his respirations - but we weren’t giving it for that reason just to control his pain. And that with his other Illness his body may start to shut down. I was crossing a line saying even that as the policy at the hospital was doctors were to have all those conversations. But there was no doctor around and he botched the first attempt so I felt it appropriate to assure her that we were caring for her fathers pain and try to prepare her for the consequences.sure enough half hour or so later the patients resp rate and bp plummeted. We had a procedure at this facility on when to call the met team - including these two criteria the man now displayed as well as “any time a nurse feels worried for a patient”. While yes I felt this man was not long for the world , Calling the met team was really not In my patients best interest. I did it though -with hopes the doctors who arrived would see the situation and talk to the daughter and write some palliative orders. i explained I would call the team due to the deteriorating in breathing but because of the pain meds which he needed they would not likely be able to do anything and they would talk to her when they arrived about the options. the team arrived and assessed the patient and the file, the patient now had a high temp too and previously had been on oral antibiotics. The doctors gathered round talking to each other and asked me to give iv antibiotics as this was the daughters wish, while they debated about sending him to icu. Even though it wouldn’t do much for the man I didn’t feel it would hurt as he had iv access -and so I drew up the antibiotics. I wasn’t entirely comfortable with it but I felt maybe it was important for the daughter to see we were doing things to help her dad and I didn’t think it would hurt. As I was about to flush the iv with saline the patient - barely breathing and hadn’t spoken English for years - grabbed my wrist and said very clearly to me “lady ! Why you Do this ? Didn’t they tell you I am old man dying ! I don’t want this !” I know he had a fever and many other conditions and pain killers but that man looked into my eyes and I felt I knew his heart. It was my instinct already that he needed pain relief and comfort and dignity to say goodbye to his family.I put down the anti biotic and went to speak to the drs about what he said and that I hadn’t given the antibiotics. After a conversation with the daughter they maintained he was for full active resus and ordered not only the antibiotic but narcan. I was a new nurse in acute care. I was shy and lacked confidence. There were tears in my eyes as I shakily said no. I would not put the man through it. It would wipe all the analgesia from his system and he would be in agony and still dying from end stage cancer. And I strongly believed he didn’t want any more intervention. The doctor told me it wasn’t my call and my job was to obey. He told me “no one wants to waste time on this but it’s the law the family want it.” I felt sad for this man that he no longer had a say and I felt angry at this daughter. I contacted the nurse manager on call in the hospital and told her what was happening. She told me “if you don’t want to give it that’s fine let the dr give it.” I told her that may absolve me but it doesn’t help the patient and I hysterically asked her to come and intervene. She did. She had many years as a nurse manager dealing with situations but I could see she too was a bit hesitant to step on the doctors toes. I followed her into the patients room where two doctors were holding the man down trying to get blood gases from a femoral artery ! It astounded me they would traumatise a palliative patient like this. But again they had a job and per the paperwork and protocol this was what they had to do or risk being accused of killing patients. they had narcan on their trolley but not syringes or needles ( too bad if it was a real emergency !) and asked me for a needle and syringe. I said no. They asked for the key to the cupboard where the supplies were. I said I don’t have it. Which was a lie it was in my pocket. I felt so justified at the time but also a part of me was screaming what are you doing refusing to give a doctor supplies !!i was then kicked out of the room while (in front of the patient) the doctors and nurse manager argued ). I saw the daughter sitting crying and went to talk to her. I wasn’t sure what to say. It was my place to advocate for my patient and so I decided to Be frank with her. I explained that because there was a full active treatment order it meant any time we gave pain relief her dad may had effects like depressing his breathing. And due to the orders it meant a team like this had to come and focus on his breathing and bp and keeping him alive - as opposed to his comfort and dignity. i asked her if she knew her dads prognosis. She said she knew he would die very soon and was trying to make the right decisions for her dad and by her religious beliefs that life is sacred. She felt withdrawing these active measures was giving up on life. I talked to her a little about my own belief In God and why I wanted to be a nurse. It occurred to me she didn’t have the view point I had of seeing many palliative patients die in agony. She only knew she loved her father and the doctor Had made a comment about euthanasia and she then felt she had to stick up for her father and make sure he was treated. I told her that her fathers Illness would likely take his life soon - the choice she had was to make him comfortable and dignified and sit with him - or fight the illness and send him to intensive care with no pain relief and tests. I told her what he had said to me as I tried to flush the iv. He hadn’t spoken English in years and I wasn’t sure she would believe it. But she told me he used to call all the nurses at the nursing home “lady”. She had been made to feel that if she loved her dad she would fight for his life. But I helped her to see that his comfort and dignity and wishes mattered too. She had been made to feel that things like giving pain relief were because we were “trying to kill him quicker to save resources”. I explained what narcan would do and the pain he would be in and it would happen each time he had pain relief and breathing slowed. I explained to her that for me I felt there was a very big difference between euthanasia and actively ending someone’s life - and palliative care in a terminal case where life saving treatments are withdrawn and comfort given. She was very religious and felt she had to fight for life at all costs as her priest told her. I was a Christian at the time and I tried to explain my beliefs that sometimes medical intervention went too far. The treatments couldn’t help her father he would die very soon and she couldn’t change that. Only change the way the last days were. She felt she was killing him to give him pain killers. And I explained perhaps it may hasten his passing but it will make sure he is comfortable. Withholding pain killers and sending him to icu wouldn’t help him only hurt him and prolong the agony. She was silent for some time and I was scared I had spoken out of turn and over stepped. But she then asked me “why didn’t the doctor tell me this? He didn’t tell me that active treatment meant my dad couldn’t have pain killers? He didn’t explain it he just said he believed in euthanasia and was a catholic so it was ok for me to Not get my dad treatment. “In the interns defence he probably never had that talk with a patient family. And he maybe assumed she knew already. It’s easy to forget that many people don’t have the experience and knowledge of palliative care. Especially back then this was some years ago. The rest of the doctors who responded to the met call had been told “the daughter is a religious nut and wants full measures. Do it or we will be taken to court “. I found out later there had been a previous incident where the met team made a judgement not to take a palliative man to icu and the family took legal action. The family said the doctors pressured them to sign the forms etc. the case shook them and they were told follow the paperwork from now on. None of them tried to talk to the family as they had been told the family were “religious nuts “ and they Didnt want to be accused of pressuring them. They presumed the intern had a full talk and the family understood and wanted full treatment.After I had talked with the daughter she approached the met team and signed the pall care papers. Much to their relief. They didn’t want to be doing it to this man either. After a bit of drama I felt it was a good outcome for the patient and daughter and for all to staff too. Yet one of the met team approached me moments after and said he would report me for having the conversation with the daughter as end of life care etc should be discussed with a doctor. I was torn between feeling bad and feeling justified. He went on to say he would report me for refusing to give narcan or unlock the supply cupboard. The nurse manager came up behind me and told him “my nurse wouldn’t have to have that conversation if any one of you had bothered to do it hours ago. It would have spared this man and his family this pain. I’ll be Making a report too! I shouldn’t have to be called to the ward to sort this out when there are five doctors here. You are lucky she didn’t give you the keys because if you had given narcan to that patient I would make sure you lose your licence. The family would have a legal case against you as you didn’t inform the daughter the consequences of what you were doing. I understand there’s legal limitations to what you can do - but stop and look at the patient and talk to the family and then my nurses wouldn’t have to defy your orders.”I never heard a word about it afterwards. I asked the manager weeks later she said no one filed a complaint either way but that there was now mandatory training about how to talk to families in those situations as well as liaising with nursing homes about the importance of sorting this out before it gets to an acute situation. In some ways I understand the dr being angry as I defied his order and perhaps I could have done it differently but end of the day the patient was palliative and comfortable and the family was happy all the paperwork in order and yet he was angry as if he was saying it would be better if we gave narcan and took him to icu.Sadly this isn’t uncommon. Years later as I worked a shift in a nursing home I had an almost identical situation. A patient with terminal illness and dementia who fell and hit his head. Because of the dementia and the medications he took there wasn’t a reliable way to determine if his neurological state was deteriorating. Despite having end stage cancer which he was not having treatment for , there were no documented end of life wishes from him or his family. Being the middle of the night and an acute situation (as in if he was bleeding in his brain we couldn’t wait til morning if it was to be treated) there were little options. I called the next of kin — a son who lived nearby - and explained what happened - that he may or may not have a head injury - and we can keep him here and comfortable or send him for x rays etc which would be uncomfortable and due to his condition very likely nothing they could do that we weren’t doing here - keeping him comfortable etc. it’s a hard conversation to have especially over the phone in the middle of the night. and The son decided he didn’t nescessarily want his dad transferred to hospital but did want a doctor to see him. So we called the on call doctor who arrived a couple of hours later. Like us he wasn’t able to determine any neurological injury due to the patients condition - and he called the son to explain this - that if there was some injury there would not be anything the hospital could do. The son didn’t disagree but said he didn’t want the responsibility of signing the not for active treatment not for resus. If the man hadn’t hit his head he would have died shortly from his illness and having no “not for resus” puts the nursing home in a hard position. Legally you are supposed to attempt resus and call and ambulance -but atthe same time it’s a terminally ill patient where the doctors have written the prognosis is the patient will die soon and there is no treatment. anyways because of the paperwork the dr called an ambulance to cover himself , I may have done the same too if it were my call. I like to think I could stand for my patient and just pretend the fall never happened or pretend we found him too late and hope the family doesn’t sue us. But it’s so hard not just because the law isn’t on your side - because there’s a nagging voice in your own mind telling you that this is a person and a life and you have to do all you can for them. It’s one of the things that drove me out of nursing. It’s hard to know what the right thing is. Anyways the ambulance came and abused us for wasting time and for “torturing “ the patient. I don’t blame them I felt the same. I told them if you think it’s the wrong thing then you can refuse to take him. But they didn’t want to wear the legal consequences either. So they took him. He was in the emergency room for three hours and died there alone rather than in his bed in the home he lived for seven years with staff he knew and pain relief. That haunts me to this day what I could have done differently and why I didn’t stick up for that patient like I did the other man in the hospital. it’s not just the law that made me go along it’s something else hard to explain. We all just go along the doctor the ambulance the ed staff no one stands up and says this is wrong and I don’t know why I really don’t. I would have thought years later I would be more equipped to talk to the son or defy the dr but the years in the system somehow had the reverse effect and I let that man Down. The system did too. A terminal patient in a nursing home should have end of life orders documented and the family should know what to expect and what palliative care plans are in place. I can’t tell you the number of times I’ve called family or an ambulance in the middle of the night for a terminal patient who has no pain relief charted no instructions what to do no pall care order no not for resus. These things shouldn’t be decided in the middle of the night at the last minute.another time I refused a doctor was again in a nursing home we had a patient who was unresponsive. I called the on call (it was night shift ) and without looking at the patient he told me not to bother - she had alcoholic dementia per her chart - and it was expected. I explained this lady (in her early 50s) was very alert and active only half hour before and something was wrong and I wanted to transfer her to a hospital. He said “no don’t waste their resources , call her gp in the morning“. And he left. I called an ambulance after that and they came. They looked at the chart and saw the diagnosis and scoffed too “it’s a nursing home patient with alcohol related dementia she’s supposed to be out of it”. I explained the sudden dramatic change in her consciousness and the fact that aside from the dementia she had no other problems and insisted they take her. They did so - but warned me that I would be sorry for this , and that they would be back in twenty minutes when the dr discharges her. I felt stupid I have to say and started to question if it was nescescary to call an ambulance and defy the dr. Ten mins later I hear the helicopter over head and the patient is being transferred to the city hospital with acute renal failure. She was treated and then returned to the home happy and healthy and enjoying her quality of life. I shudder to think if I hadn’t called the ambulance. What was even more horrifying is the reason why the patient was in renal failure. She was vocal at night and one of the night staff had been giving her (non prescribed ) sedatives which lead to her being drowsy and not eating or drinking enough. This staff confessed it to me after I sent the patient to hospital and said she was so glad I did otherwise she would have a death on her conscience. I reported this and the nurse denied it - and nothing happened though the counted the sedatives a bit more closely after that.Another time I was an agency nurse in a dementia wing. I had worked a few shifts and knew the patients and one patient appeared to be in pain. He was non verbal and unable to walk he was full care. But he was grimacing and moaning -unusual for him - and he was vomiting. Something in his eyes was not right. He was a palliative patient and had no family , Sl I didn’t want to send him to hospital just some pain relief for him. This nursing home didn’t have a dr on call it was a locum in the community who was very irate at having to come to a dementia ward in the middle of the night. He went in and looked at the patient and came out saying “he’s not in pain.” I politely said I disagree and asked how he came to this conclusion. The dr said “he didn’t complain of pain when I asked him.” He hadn’t spoken for years so he wasn’t able to complain. I explained I knew this patient and he was not well and I felt he needed pain relief. The doctor said he didn’t think it’s needed and “shove a couple panadol suppositories In him if you really want to.” And walked off. Ashamed to say I just stood there. Another nurse was walking past and heard this and followed the dr out telling him “i hope when you’re dying some dr comes and shoves a suppository up your ….” He marched back to the desk and wrote a morphine order ,a small one, and stormed off. The nurses and I gave the pain relief but he was still in discomfort. His own gp came first thing in the morning and prescribed regular pain relief and he died shortly after. He had a major coronary event and would have been in a lot of pain. He got pain relief at the end but he spent that night in pain and it was so needless. Having said that his own doctor should have written prn orders as he knew the patient was terminal and likely to be in pain at some point. I asked the doctor about this and if there was legislation that prevented him writing prn orders for this purpose and he said there wasn’t any legislation but he preferred to be called when his patient was unwell or unstable to come see them and prescribe. That’s fair enough but the same gp won’t allow nursing homes to call overnight and a locum who doesn’t know the patient has to come and isn’t likely to want to write a prescription like that.The other time that springs to mind again in an aged care facility where there was a scabies outbreak. Not a big deal it happens and is easy to treat. For some reason the manager and the doctor of the facility wouldn’t address the problem. I would write notes documenting rashes and itching and the manager and doctor would come on the next day and say there was no rash and no itching. Staff began to get scabies and went to their own dr for medical certificates and went to the management and were told “you can get scabies anywhere you didn’t get it here .” It was so frustrating because the residents were ill and the last thing they needed was more discomfort. To this day I don’t understand why they denied the problem. We approached a skin specialist who assessed the staff and two of the patients who went to see him with their family and he diagnosed scabies and they were treated. He offered to come to the home to look at the others but the home refused and stated they had their own dr. Week after week this doctor would write absolute lies about no rash no iTching. We made a complaint to a higher authority who came in and spoke to the manager and doctor and left again without any action. The doctor wrote in several patient notes “this patient does not have scabies. Night staff are hysterically paranoid about scabies and imagining symptoms. I have examined the patient as has the nurse manager there is no scabies.” I was angry at the insult as well as the patients suffering and that night took photographs of the rash on each patient who had a rash , those who could talk I quoted their description of the problem in their notes. The doctor also wrote some of them had “heat rash “ because night staff were putting too many blankets on and that’s why the rash was only there at night. So we documented the room temperature the number of blankets what the patient was wearing etc, and a colleague on day shift did the same , taking photos of these rashes in the day shift to show it wasn’t night shift imagining it. We made another report to a different organisation. The nurse manager and doctor called me to the office next day to tell me “no one has scabies. But to get you nurses to stop freaking out we will treat everyone in the facility. But you have to take out the progress notes and photos you put in the patient notes. “ i knew several patient families had made complaints and asked for the patient notes - and I wanted to leave my notes there to support their complaint that nurses reported the problem and the management and dr did nothing. Besides it’s a legal document and my notes were the truth ! I refused as did other nurses who had done the same. The doctor finally ordered all patients treated (almost one year later ! Some of them passes away with horrible itching that was easy to treat !) but he wrote on every single order (patient doesn’t have scabies - just treating to please hysterical nurses ). The patients were treated (twice ) which involved staff from nurses to aids to cleaners and laundry staff volunteering extra time without pay to get it done. Everyone did so willingly because we had been fighting so long to get this treated. And there were suddenly no more rashes or itching. I know it seems a small thing a bit of itching -but we had a responsibility to provide care to those people and we failed. Again I look back and wonder what I could have done differently. After I refused to take my notes down or alter them I was told if I didn’t I would lose my job. I quit. I probably could have tried to fight it but I didn’t want to work there anymore. I felt bad leaving though as if all the people who speak up against things like this leave - who is left to speak for the patients ? Five staff left the same time I did all staff who were fighting for the patients to be treated. Later the home was investigated over the incident and the dr and manager convinced everyone there was no scabies just hysterics nurses who have now all left.I haven’t thought about nursing in a long time - suddenly things come back to me. When I was a very new nurse in a nursing home we had a patient with terminal cancer and very early Alzheimer’s. She was alert and oriented and knew where she was and who she was and very cognitively aware most of the time. She had back pain from metastatic cancer. Her family told her she had a back injury and put her into “respite “. They didn’t want her to know she was sick or dying as they felt she couldn’t understand due to her Alzheimer’s and it would confuse and upset her. As such the dr wrote in her notes that staff were not to discuss her diagnosis or prognosis with her per family request and dr order. This wasn’t a problem until the patient started asking me what was wrong with her. Why did she have so much pain. She felt her family were keeping things from her and she said to me “they don’t want to upset me but please tell me the truth”. I told her to talk to her family and then immediately contacted the manager about my concerns in keeping things from this patient who seemed very alert and oriented and was asking me very clearly things about her pain and prognosis. The manager said to go along with the doctor and family. So myself and another nurse approached the doctor about it - he said it’s what the family want and the patient is cognitively impaired so she can’t judge for herself if she can cope with the diagnosis. She had a history of depression and the family didn’t want her upset. I felt this was wrong but felt a bit stuck at the time. The next night the patient asked her family for a priest to say last rights. The family said no there’s no need you’re just here for respite. That really bothered me as this lady was very religious and last rights were important to her. She wasn’t silly she knew she was dying and that everyone was keeping it from her. She felt she could trust the nurses and asked us over and over if she was dying. Again I raised my concerns with the doctor and manager about calling the priest and that she had a right to the last rights. The doctor said fine to call the priest but no last rights. This made me more and more upset that the patient couldn’t have this ritual that was important to her or time to say goodbye to her family etc she was distressed and knew something was wrong and yet we were told in no uncertain terms we were not allowed to talk about her diagnosis or prognosis or last rights. Myself and another staff contacted an advocacy group for aged care patients with dementia and they were fantastic. They came in and spoke to the family - acknowledging their good intentions but trying to explain the patient was able to hear the truth and she was alert and oriented and knew what was happening. The doctor was furious that someone had come in telling him what to do and that nurses had gone over his head. He made no attempt to hide his anger about it. He was told to tell the patient the truth if she asked him. That day (a Friday) he wrote in the notes about the advocacy group meeting and that he would talk to the patient Monday and if she asked him and was alert he would discuss her diagnosis. He then left without seeing the patient. The family were upset too they felt they had been told off and disrespected so it wasn’t a nice situation at all. The lady died over the weekend - the dr knew she would likely not be around Monday or be too sick to talk about anything. She died confused and agitated. I called a priest and the family allowed him to come but not to acknowledge or talk about the fact she was dying. we left the room and I don’t know what happened in there but I like to think the priest was a better person than me and was able to be honest and give her some peace. After she passed away the family were distraught. Through the process I had been angry at them. But as they cried and asked me if they had done the wrong thing I could see they were doing what they felt best. They said the doctor thought it best and they didn’t want to upset their mum , but she asked them if she was dying and they felt bad they hadn’t been honest or allowed the priest to come or say goodbye. And I asked myself if I had ever tried to talk to them about it ? I argued with my manager and the doctor and reported it to advocacy groups as I felt the patient had no one to speak for her rights - but I hadn’t approached the family and asked them why they made that decision or if they felt things changed and they wanted to tell her the truth. I was so frustrated with them for the way this lady had died - but as I saw them crying I told them I knew they made the choice because they loved their mother and were doing what they felt best - and it didn’t matter now it just matters they were there in the end with her and she knew they loved her.Now I think on it I suppose there are more times I wish I had defied the doctor then times I actually did. Many times it’s not the doctor who is the problem it’s the system as a whole so I’m not trying to say doctors are terrible or anything. And these bad examples are only a few. There have been many amazing doctors I have worked with but the bad times haunt me I suppose and stick in my mind.