My dad was a 'throw-away' - Page 8

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  1. I would like to 1000x's LIKE grntea's post.

    What a great thread even tho we don't all agree. I think the important point here is...have you had this discussion with the ones you love? Do they know and understand YOUR desires? Do you know and understand THEIR desires? I'm sorry, but I think that piece of paper a living will on is absolutely worthless if your family will not follow your desires. (The family will be the ones left alive and able to sue the Dr and the Dr is well aware of this).

    My 18 and 16 year old kids have grown up with their Mom being a geriatric nurse and (as they've gotten older) heartbreaking stories of my old folks dying. They also remember my heartbreak in helping to decide to let my Grandma go after a massive CVA. I've talked to them many times about quality of life and I really believe they get it. They know if there is no hope to ever feed myself or wipe my own rear - I want to be left in painless peace.

    My husband...he is a wimp. I have little doubt that he would think it would be a good thing to demand Drs do everything to keep me alive forever. I've decided that I need to get papers in order to allow my Mother to be my healthcare rep and in her absence my 18 year old daughter will be the alternate. (She knows this and agrees her Dad could never handle it).
    Altra, wooh, not.done.yet, and 4 others like this.
  2. Quote from alaur74
    I agree with you- it is up to the doc to discuss dx and prognosis, this is not our role. Our role involves carrying out our tasks, assessing, monitoring, acting and reporting, and providing comfort to our patients and their families. It does not involve throwing our opinions and beliefs into the mix. We have no right to do this. Even if a family member asked me what I thought, I would offer something along the lines of 'It's not something I feel I can comment on. But it sounds to me like you are having some concerns about (treatment/diagnosis/prognosis etc.) so let me arrange a doctor's visit. Would that be ok?'. Support and advocacy. It's pretty easy, especially if it comes from the heart.

    The thing is, we were feeling optimistic based on the specialists’ prognosis. So let us have that. It isn’t the job of the nurse to take that away from us. There is nothing anyone can post here that will make me believe any different. Support people where they are and let the docs do the rest. That's it. If you want to go beyond that in your practice, then you need to engage in a little introspection and examine your motives.
    Of course judgement is not something anyone(not just nurses) should be doing, but education is a critical part of nursing. Educating on the benefit of discussing between the patient and family on whether they would like to complete end of life papers/POA/DNR/living will/whatever is important. We discuss that with every single patient who is admitted into my hospital. The honest truth is you can die from a routine gallbladder surgery so these forms are important to discuss with patients. Educating honestly on the pathophysiology of the conditions the patient has is something nurses do every day. Educating in a straightforward manner that a patient has risk factors for x/y/z and that is why they are getting this medication or that treatment, etc. If there is something we don't know we should be honest about that too, and yes, stick with facts.

    When my family member was unexpectedly hospitalized as a young adult with TIAs and a heart condition which needed OHS, one doctor came in and told my family she was at risk of heart attack or stroke at any time. My family hated this doctor at first - he scared them with how he talked, and they thought him cruel because of it. However, they came to realize they liked the doctor the best because he was honest and was trying to prepare them for what may happen. Its not easy to say that a patient is very sick, but its unethical to lie or omit information to give false hope. A lot of it is in how you word it. Its one thing to say 'your family member has no chance', and its another thing to say "Your family member is very ill which is why we are closely monitoring him in the ICU. He has X condition which means Y, you have opted for treatment option Z which has potential complications ABC from that which we are monitoring for. Has the patient discussed with you his thoughts about what he would want if he should ever be in a situation like this?" Just the facts, ma'am.

    I've had to make the call that a family should come in to be with a patient who was tanking. Again, wording is key. You don't word it "Your family member is going to die, you need to come in now", you word it that "Your family member is not doing well, we are not sure what the outcome will be, you should come in now to be with them." Were I to wait for the doctor the patient may have been unconscious or dead before the family got there.

    There's no easy way to do a lot of this, but its part of our job as nurses.
    Last edit by Ayvah on May 2, '12
    anotherone, CompleteUnknown, Altra, and 5 others like this.
  3. What I was getting at is that I don't think it is a nurses' role to be the first to introduce an idea with respect to diagnosis or prognosis. For example, I recall one nurse saying to us 'the doc ordered an EEG to see if your dad is still even in there'. We were taken aback at this, as no-one had used language like that with respect to my dad's state up until that insensitive remark was made. It was out of the blue and my dad's doctors had not even said anything to that effect at that point.

    Having said that, I agree with you that we are there to make sure our patients and their families have the information they need. I know education is a big part of our job. I forgot to mention that in that post. This is a great way to connect and provide comfort to people when they are navigating strange and scary waters.

    you make some excellent points Ayvah. I would love to have a nurse like you at my father's side.

    Also, nascar nurse- you are so right. I am so thankful for this thread. I am so happy and have learned so much from the different perspectives shared on here. We don't all have to agree on everything, but I am happy to see that the desire to provide great care of our patients is the commonality we all share. I have tremendous respect for all of you, for what you do every day.

    grntea- your post touched my heart and brought tears to my eyes. what an incredible love you have.
    Nascar nurse likes this.
  4. papers are all in order long since, never fear. thank you for providing the reminder to others.

    we are a very lucky couple, and we know it. second marriage, 24 years now.
    i think one of the best lines regarding loss is, "don't mourn because it's gone. smile because you had it."
    Nascar nurse and alaur74 like this.
  5. Alaur74, let me start by saying almost all the quotes you have given from nurses in this ICU sound extremely inappropriate. Their manner of communicating needs severe help. Many of the thoughts they are communicating need to be kept to themselves.

    I'll further add that in my work in the neonatal ICU I try to continually remind myself that the families are under extreme stress (particularly the mothers with postpartum hormones and the recent likely traumatic birth).

    Next let me add, that my patient primarily is the the one lying in the bed. 1st and foremost. Family is important, but they are not my first priority. Many do not understand this. I am the infant's advocate first, family second. Do I think the nurses you have discussed are advocates for your father? It doesn't sound like it from the quotes you have given (mostly). Several of your comments have alluded that the nurses are not advocating because they are not advocating for you and your mother. I know this is a fine distinction. But it's this distinction that will lead me at times to discuss long-term prognosis with a family. In very safe & couched ways (that I could back with research if push came to shove) I may discuss the expected prognosis and sometimes it's not a pretty picture, and is this what they want for their child? With an infant, it's not really appropriate to ask what they would want, it's the expected parental role to assume that decision. Sometimes, advocating for my patient means discussing things that make the family unhappy, i. e. not "advocating" for the rest of the family.

    I have a difference of opinion with you about the scope of what nurses discuss with families. I will not purport to know the intricacies of the nurse practice act, you are probably more current on it than I am. I will chalk up the differences of practice as likely being due to different areas of practice and perhaps the culture of my particular unit. In my unit, it is expected that nurses will continually update and explain the diagnoses, prognoses, plan of care and all that with the families. This is given our most common diagnoses such as prematurity, RDS, common birth defects. If it's anything unusual, we definitely defer to the neo or specialist. One of the nice things about NICU is that we usually deal in a much narrower range of problems.

    One more point; I think others have commented on it before; when you mentioned that it wasn't the job of a nurse to take hope away from you. No, it's not. The quotes you gave regarding that were inappropriate.

    Let me end by saying that it sounds like you truly have been an advocate for your father, and I am very happy to hear he is recovering and will likely be ever thankful for your intense support during this difficult time for him.

    I want to give you the last word. You pointed out the most important aspect of this whole thread which overrides any aspects of who is the patient, who is the priority or anything else. . .



    Treat them with respect.
    alaur74, anotherone, Altra, and 1 other like this.
  6. Asst. Admin
    Quote from Bruce_Wayne
    I've read this whole thread and I have learned a lot. I hope your father the best.

    An issue related to this topic but not yet discussed in this thread is to follow the patient's wishes, which sometimes gets difficult when the wishes aren't in writing and you have different family members advocating for different things (traching a patient vs removing life support for example).

    As a student/tech I try to keep myself open to learning opportunities and I appreciate you enlightening me with your point of view, I hope it will help me provide better care one day.

    I think everybody on this forum could give antidotes about similar to this and others could argue back with other antidotes.

    The one thing that bugs me a little about end of life care is that sometimes in the ICU we can't let the family visit as much as they would like. It makes me sad because I would of liked to stay with my dad more when he was passing away (63 y.o.). Eventually we he was taken off of life support made a DNR and put in a private med/surg room where we could stay with him. He lived for half a day, but was never really lucid.

    But I also understand why that particular ICU had their particular visiting policies, because that's where I work.
    That is the challenge of ICU. There is a fine line between family advocacy and participation versus intrusion and safety of the patient.

    But even when there is a living will or advanced directives not all states recognize them. The best route is the appointment of a healthcare proxy/power of atgtorney....a trusted indivudual that can abide by your wishes in the event you can't say it for yourself....and it is legally binding.
    alaur74, Nascar nurse, and anotherone like this.