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cannulator 2,434 Views

Joined: Oct 22, '06; Posts: 22 (45% Liked) ; Likes: 28

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    My mom has been on hospice with advancing alzheimers. She had an incidence of aspiration pneumonia in 11/2010, which was quite severe and resulted in her physician suggesting hospice. She was eating and drinking very little, weighed about 65 pounds, incontinent, unable to walk.... I live in another state and she is cared for in her home by my 2 brothers - one of whom ( good brother....GB) is conscientious and does a good job of taking care of her needs. The other (Not so good brother...NSG) one has a long history of drug and alcohol abuse, dui's, jail time, etc. He loves mom...just not much of a help.
    I spent the whole month of December there taking care of her. Her dementia was advanced, but sort of charming. She re-lived her childhood every day, which was nice because she had not talked much about it before. She would pretend to be involved in a surrounding conversation, only to turn to me and say " I have no idea what any of you are talking about" ....really cute.
    Last month, NSG brother combined a lethal mix of drugs and alcohol and died in the home. GB found him, but it was too late. Although mom did not witness the dead body, she was aware that the police, emt's, and coroner were there. GB felt he needed to tell her what was going on, and told her NSG had died. For a few days, she was so sad...tearful and melancholy. Her hospice nurse let her talk about it when she wanted to, and was a comforting presence. After 2 days, she did not mention it again. However, she began to have some personality changes that were quite a difference from the sweet demented pt she had been.
    Although weak, she started to try to climb out of bed and tangle her legs in the bed rails. She would tear off the diaper, try to
    take off her nightgown. She even took a swing at the hospice nurse she had known for 3 months! A few more days pass, and my friend who had been visiting mom tells me that the right side of her face is drooping a bit. I arrive a few days later for NSGbrother's memorial service, and indeed, the right side of her mouth is drooping....also, the pupil on that side is dilated ( I made my husband and daughter come and see it to verify). My brother told me that the drooping " comes and goes" and that it had never been present when the hospice nurse came to see her. I was skeptical that the pupil dilation could be sporadic, but sure enough, the next morning, the pupil was normal and the facial droop gone! The following morning, the other pupil was constricted and the right one normal. Most disturbing to me , however, was the new and constant vacant look on her face. Since I had seen her a month earlier, she had slipped away. No more hint of her sense of humor, no more recognition, no more mom.
    After she started acting out, her haldol dose was increased to 2 mg q 6 hours. She takes Ativan 1 mg prn, maybe once daily at bedtime.
    So, I have a couple of questions...even though I know that for a hospice pt, we won't be treating these symptoms. I am interested in what experienced hospice nurses may think about this unusual situation.
    -have you ever seen pupils dilate and constrict randomly?
    - does the facial droop and pupil changes sound like tia's? Can the grief of losing her youngest child bring on these episodes?
    - would you have told her that her son died ? Is it unethical to make a pts last days happy by telling her that her son has turned his life around and is elsewhere trying to do just that?
    - how does a person in the demeted state process the death of a son? Even though she stopped talking about it, isn't that grief still in there somewhere?
    Thank you for listening to this rather long story. I have been a nurse for over 30 years...never in hospice, though. Thanks for all that you do every day. When they say "out in the trenches" , they are are talking about hospice nurses and aides...

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    I do not have any statistics regarding nursing salaries in countries with a universal healthcare system, but I do have personal experience. I worked in the NHS in England, and my salary was much less than I had made in the Washington D.C. area prior to moving to London for my husband's job. I worked as an Oncology chemotherapy nurse in both places. Even with the exchange rate, my salary was about 1/3 less than in D.C.My taxes were substantially higher, with about 35% being taken off the top for various social programs - mostly healthcare, from what I was told. Since i was wroking there more for the "experience" than the salary, I was ok with it. But in 2001, the statitics were that only 1 in 10 nurses in London were British - the low salaries and high cost of living prohibited local nurses from working in the City. The vast majority were foreign-born, recruited from English speaking countries from all over the world (Africa, Australia, New Zealand, Malaysia, the Phillipines). All of the nurses that I worked with were really excellent clinicians, but there was some resentment from patients in understanding the various accents (including mine
    The poster who questioned the necessity of nurses providing customer service would have been pleased to work in the UK. While pleasant enough, I think we would term the nurses "cold" or "indifferent". I often wondered if it was this way in an Oncology hospital, what would the ER be like? There was no liability to worry about in the UK - at first, it was "freeing" not to worry about frivolous patient lawsuits or angry patients who had waited 8 hours to get their chemo. After a short time, however, it was obvious that the nurses were shaped by their indifference, and that the lack of consequence for rude behavior made for callous treatment of patients. In a strange way, I believe that the subconscious fear of litigation forces us to be more humane and empathetic to our patients....over time, we become better people, as well as better nurses.
    The drugs available on the formualry in the UK did not include many standard chemo drugs we used in the U.S. in 2001. Too expensive for the NHS to provide for the whole country. Nine years later, I am sure they are available now, but others that I give everyday where I work now are not (Avastin is an example, which in combination with other chemo drugs is used in many different types of cancer).
    I do not want to give the impression that I disagree witth the notion of universal healthcare, because I loved the part of working there in which I did not have any reason to know a patients' insurance status. When working in this system, you are allowed to only care for a patients' needs without regard to payment status.Even though you may be required to work with more limited resources, that is a good feeling. But I think there will be huge adjustments to make, on both the nursing and patient side, if we go forward with a massive change in this country. My guess is that salaries will be lower, staffing will be reduced, services will be cut,waits will be longer (again - just what I experienced, both as staff and pt in the UK). People will get used to it, as will nurses. The main thing I learned there was that I can work effectively in any kind of healthcare system.
    (Just as an aside, I also lived in japan in the 90's......the poster who stated that Japan is a no-frills hospital environnment was exactly right. The pts family had to provide round the clock care to the pts, including bringing meals and giving baths. I has a friend who was admitted to a local hospital, and the Dr would not talk to her directly....he would only discuss HER medical condition with her husband!! This was in 1993, for heaven's sake

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    mama_d likes this.

    Even though you have had 4 cases using the affected arm, I might suggest that as an ER nurse, you may not have known about lymphedema that occurs as a subsequent result of an action. The pt may be discharged from the ER by the time such an event occurs. In addition, the fact that a physician orders or approves such an intervention does not mean that nursing judgment goes out the window (as your signature states "liberty means responsibility", I would carry it further to include "medical and nursing judgment means responsibility"). I understand that a physician order does not clear me of liability, or responsibility.
    How long does it take to ask every pt (as you are putting on the BP cuff or tourniquet) every time "have you had surgery or any procedures on this arm?". An easy and quick question that may save the pt from a lifetime of a painful condition that may have been avoided.

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    mama_d likes this.

    Roy,Would never use an arm from a bilateral mastectomy for BP or venous access....I have seen a lymphedema twelve years out from mastectomy. We always use the calf for BP and foot vein for blood draw.
    But, I would feel ok using the same arm as a PICC, if that's all that was available, especially for a blood draw.

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    I've seen it done both doesn't matter. But if you do have a primary line running, just be sure your solution is compatible with the brand of IVIG that you are using.

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    "I had a coworker-had a rash-after one year of trying to find out why she was having weird symptoms, her GYN realized she had something wrong and found Hodgkins Lymphoma stage 4-that was 7 years ago. She did all of her treatments-she suffered and she is alive and has LIVED during these past 7 years. How long, who knows? Will she have a reoccurrance of CA due to chemo and radiation? Probably, would her family think her life for the past 7 years was a waste? No If it was your family member, would you?"
    So this is the perfect example of risk vs. benefit in the chemo world. You have misunderstood my premise, that some chemotherapy regimens do not adequately increase time to progression. Because of the nature of certain aggressive cancers that we know and can predict the course of, the added cost of chemo is not only unjustified on a economical scale, but on a personal scale. But in the case you described about Hodgkins Lymphoma..... that is a disease that, even at stage 4, is extremely responsive to chemo and has an excellent cure rate with chemo and radiation. The drugs used are not the expensive new ones, but the old tried and true stand-bys. we use these drugs not because they are familiar, but because they produce an excellent result in a disease which fortunatley, has an excellent prognosis. I don't know her case, but most pts do not have recurrence of Hodgkins Lymphoma, although a minority do get a seconadry leukemia due to the radiation they may receive during treatment.

    "So, back to paying for chemo first. While it's sad to think of how many have nots there are coming to the US for a better life, yet we treat them for free.....I have a huge problem with those of us who have worked since being teenagers, paid into this sytem, and get that "SORRY, no ticky-no shirty" line when we need help. I choose to have my taxes go to something more worthwhile than IRAQ and the worst president this country has ever seen! ARE YOU ALL AWARE THE DEFENSE BUDGET CAN NEVER BE CUT? We have no say. BUT MEDICARE is on the block every year! What does that say about us as a country? Taxed to/for death?"

    Just to gently correct you...of course the defense budget can be cut. It was greatly cut in the 90's, largely due to the ending of the cold war which happened in the Reagan Administration.
    How interesting that you make a plea for universal healthcare, equality for all....yet are enraged by non-citizens who get "treated for free".
    In the UK, everyone is covered under the NHK, even people who are visitors transiting through the country.

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    After reading the many pages of this thread, I am surprised that there has been no clarification of some rather common terms used in Oncology research and practice - time to progression vs. overall survival.
    Many of the new cancer drugs which are commonly used on a daily basis in oncology care in the U.S. have been approved for use based on 2 criteria: that it is at least as safe and useful as the currently accepted regimen, and that it has an increase in "time to progression". Simply put, compared to the current standard of practice, there is an increase in the time between recurrence or growth of recurrent disease with the use of a certain drug. Unfortunately, this time to progression is very often only a short time, often only 2-3 months - at the cost of tens of thousands of dollars per patient . We have gotten very good at getting insurance companies to pay for these treatments, in spite of the poor track record they provide. However, this may soon be coming to a halt, as Medicare is questioning the use of millions of taxpayer dollars on the hope of an extra month or two of life, with questionable quality. Rather than using "time to progression" as a gauge for a medication's approval, the European model uses a different endpoint for drug approval - overall survival. Basically, a new drug must prove that it extends life quantitatively before it becomes the standard. I worked at a Cancer hospital in London, and can tell you that the drugs we take for granted here in the U.S. are simply not on formulary there. In addition, something that you just do not hear about very often in the U.S., is that people with means in the UK purchase private insurance to pay for their medical care. Our hospital had two separate sides to it- the NHS side and the private side - two different staffs & 2 different billing systems. It was common knowledge that the private payers were keeping the NHS afloat financially.
    Overall survival is a legitimate endpoint for drug treatments. The short increase in time to progression with no survival benefit does a disservice to patients, as well as the heathcare system in general. These are very difficult decisions for all involved, and I think that in all of the cases I see daily ( in a University setting where insurance is irrelevant), a lot of thought is put into presenting balanced and ethical choices for patients.
    A real difference I noticed, while working in the UK, was that individual citizens there understood the notion that illness happens, people die. At the risk of sounding callous, I think Americans see their lives as being endlessly prolonged by medical technology. The fact is, we cannot cure metastatic disease, and at a certain point patients need to be referred to hospice to prepare for the passing that happens to us all.

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    To those infusion nurses and Hem-Onc nurses who perform therapeutic phlebotomy for p.vera or hemachromatosis....
    In your organization, what sort of equipment do you use.. here are 2 choices:
    (1) an empty blood collection bag which has attached tubing and 16G needle......or....
    (2) a 1 liter vacuum glass bottle which requires separate tubing, needle, and stopsock.

    I am working on a policy for our institution and would appreciate knowing what others are using in their practice. Also, if possible, just indicate the region of the vountry you live/work in. Thanks.

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    He noticed that the port on the patient's CENTRAL LINE was off.

    Sorry, even though I have been working with central lines and ports for years, I have no idea what the above sentence means.....could you be more specific?Do you mean that the huber needle came out? that the tubing became unattached from the huber? that the cap came off and the end of the tubing was open?

    No matter, you just really have to let this go....really. Any damage done would havecome to light by now. This will never happen to you again, and you will pass this lesson on to so many other nurses you come into contact with in the coming years. This is the gift you will pass on to others, and many other gifts you will learn over the years - the near-misses which we all experience that make us compassionate, forgiving nurses and human beings.

    You are going to be fine.....I only worry about the nurses who do not worry about these sorts of errors - they scare the daylights out of me

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    "although God says we are all destined for hell without Jesus".....
    could you please cite the exact Bible location of this quote? Thanks...

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    Elle7 and Grace Oz like this.

    I love your quote - "nursing served me well, I served it well"....helps to put in perspective the difficulty of leaving/retiring from a profession which calls on our "duty to serve". I have the tendency to work longer than I need to due to the shortage, low-staffing, "calling" of the profession. But, for some reason, your quote hit home with me, when simple common sense has not

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    cannot think of any prohibition against running a central line to gravity . We always try to run platelets to gravity, and it's often through a port, PICC or hickman. However, often it doesn't work too well...just meets too much resistance and a pump is just all-around more efficient. Still, it's not because of any reason other than expediency.

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    leemacaz and calliesue like this.

    Thanks for your replies.
    I am sorry if I implied that telling a pt he/she would die a "horrible death" would ever be,no,no! But to prepare them for an event that may not pass as expected.....just was wondering, that's all.
    I do agree that PE's are out of the ordinary, but we have seen an increase in them in the past couple of years. As more data comes on out on some of the newer agents we use in oncology, especially the VEGF agents which have been linked to increase strokes, MI's, and arterial-vascular events - and which have a very long half-life and can cause these hematoligic symptoms for up to 6 months after they were delivered, I feel that PE's are more common than in the past. Our GI -onc states that 60% of pancreatic cancer pts actually die of PE.
    It does seem like we are keeping pts on chemo much longer than we used to - I wonder if you feel, as a group, that Cancer pts are arriving into hospice care in much more dire conditions, with less time to transition into the care you all provide. Our treatment options expand daily, it seems, and we see interesting combinations of off-label drug use in the hopes that it may very temporarily stave off the inevitable. Perhaps with a harder fall for the pt, in the end.....almost like a clinical trial without the oversite.
    I have been in this field on and off, for over 2 decades,and am obviously feeling a bit unsure about my place in it right now.
    Thank you for the important work all Hospice nurses do - I think in the end, it is probably the most important care ever provided to pts.