Dear Hospice Nurses, I beg you for a moment of your time, please.

  1. 6
    Good morning.

    As some of you may know, my dad has not been doing well for the last six months to a year and has been the topic of two of my articles.

    I am here to humbly ask you for information regarding hospice. I know of hospice and have had two grandparents in hospice at the end of their lives. To be fair, I was not a nurse at the time and the different view from inside vs. outside the system has left me with more questions than answers.

    A bit of situation info:

    My dad is end stage COPD with spine compression fractures. He is DNR. He wishes to die at home if possible and, even when "healthy" suffers from mucus plugs that cause rapid desaturation and deterioration to such a point that it has resulted in his last several hospitalization/intubations.

    I know that you cannot offer medical advice, but it is more advice in the way of sources of information I seek. It is also information I seek from those who guide patients and families.

    When contacting various Hospice, are there any questions that I should be sure to ask?

    Are there loopholes in the system, etc, I should be careful to know of?

    Anything I should watch for?

    Do you know of good sources of information that may be found online or in book form?

    Any recommended reading?

    To say that I am...concerned...would be an understatement. I worry that a mucus plug could cause his death to be truly horrific as any sub-lingual medications may not act fast enough to relieve the anxiety and, well, feeling of drowning that would be the result. The thought of my mother bearing witness to this is enough to make my skin crawl.

    Absolutely any information provided would be so very much appreciated.

    Thank you very much for your time and attention,

    ~~CheesePotato~~
    SuesquatchRN, uRNmyway, nrsang97, and 3 others like this.
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  3. 16 Comments so far...

  4. 6
    i'm so sorry cp...
    for you, your dad, and your loved ones.
    i admire greatly, your attempt in educating yourself so you can provide the best possible care for your father.

    my *bible* in hospice has always (always, ALWAYS) been eperc, aka, end of life/palliative education resource center.
    most nurses refer to the "fastfacts" section, but i encourage you to peruse all the educational materials and articles.
    the entire website is an invaluable resource.

    for beginners, i offer you:

    their home page - EPERC
    browse and take a look around.

    # 158 Respiratory Secretion Management

    # 238 Management of Spinal Cord Compression

    each hospice is different, even though all are bound by medicare rules and regs.
    i am not aware of any loopholes, but ensure that any and all treatments are r/t his hospice dx.

    take the time to ask questions, read their brochures and mission statements.
    i personally would suggest you rely on your *gut* feelings and stay true to and trust that.
    you definitely want a nurse/team that respects and honors the pt's autonomy and wishes.

    come here anytime to vent, to question, to validate.
    again, i am sorry... but i have also received feedback from families;
    that their hospice experience resulted in it being one of the most intimate and memorable experiences of their life...
    and for that, they were most appreciative.

    heartfelt prayers for strength, faith, and comfort.

    leslie
    sallyrnrrt, tewdles, uRNmyway, and 3 others like this.
  5. 2
    ((((((((((CheesePotato and Dad))))))))))
    uRNmyway and ILoveSpring&Fall like this.
  6. 0
    CP....I am so sorry.....I know how hard it was when I lost my Dad. I hated at times that I knew so much. I miss him so.....

    I had myself convinced that after my years of service as a nurse and caring for patients like they were my own family that my "payment" would be that my parents, at the proper old age, would pass away quietly....peacefully in their sleep.

    I was wrong.....

    I still have my Mom (even though a facility tried to kill her by perforating her esophagus with a TEE weeks after my father died) but my Dad, although the "proper" age, suffered poor care, surly nurses, lazy MD's (a whole other story)was confused and knew it.....he coded and ultimately we removed life support. The worst time of my life.

    I don't know much about hospice. I know when my grandma, 93, passed away at home on hospice after falling and having an odontoid fracture of her cervical spine......sleeping at her hospital bed in the living room while long passed family came to visit on a nightly basis was, in some strange, way one of the nicest times with her. I hold that time close to my heart.

    I know nothing of hospice but I offer hugs, prayer, and friendship...any time....any day. ((HUGS))
  7. 0
    CheesePotato:

    I am a hospice nurse, and I can tell you that you want a nurse/team that listens to what your father's wishes are and what has been expressed in any living wills or other such documentation. As a previous poster said definitely go with your gut feeling. If you do not agree with something or have questions, please please make sure you ask, and make sure you get an answer, and if that answer doesn't sit right with you, then be sure to speak with management.

    I'm not sure where your father resides, but for California there is a website called calqualitycare.org, which allows anyone to look up home health, hospice, assisted living, skilled nursing facilities, to see where the various agencies have ranked per state guidelines.

    Also, VNA hospice is a national agency, which I've heard good things about...

    I wish you and your family all the best.
  8. 1
    [QUOTE=CheesePotato;7239112. He is DNR. He wishes to die at home if possible and, even when "healthy" suffers from mucus plugs that cause rapid desaturation and deterioration to such a point that it has resulted in his last several hospitalization/intubations.


    To say that I am...concerned...would be an understatement. I worry that a mucus plug could cause his death to be truly horrific as any sub-lingual medications may not act fast enough to relieve the anxiety and, well, feeling of drowning that would be the result. The thought of my mother bearing witness to this is enough to make my skin crawl.

    ~[/QUOTE] Some hospices would come in and d/c all of his routine meds and start giving him comfort meds right now,trying to insure he passes comfortably at home the next time he gets one of those mucus plugs if that is his wish.He is at a cross roads-how many more intubations can he withstand and how many more times does he want to go through it? Be his advocate and make sure he is comfortable.Go to the websites leslie suggested,the truly are invaluable.Remember to let yourself be his daughter,not his nurse.Find a hospice whose staff you feel comfortable with and make sure you take the support they offer.
    LookUp2Sky likes this.
  9. 4
    Try to find a NOT for profit Hospice. I have worked at both, and the FOR profit Hospices were inferior.

    Dying Well by Ira Byock, MD

    Be sure whoever you decide on knows you are a nurse, are educated in palliative/EOL care, and expect the BEST possible scenario for your dad.

    Be the squeaky wheel.

    Death is as precious as birth. Plan for it, do all you can to prepare for it, and be there as much as you can during his transition. Stroke him, love on him, treat him as sweetly as you would a newborn. At the very end whisper in his ear how much you love him and what a good daddy he was. Make his transition as gentle as possible.

    You are about to experience the most touching, loving, spiritual moment of your life.

    God Bless you and your daddy.
    LookUp2Sky, Bubbles, motherof3sons, and 1 other like this.
  10. 0
    CP... I am so very sorry; my heartfelt sympathies are with you & your family. Definitely check out the website that Leslie recommended. From my own experience as a hospice nurse, and a sad situation my family experienced with a hospice in a different location, I would ask a few questions of a hospice that might take care of my family. As mentioned by someone previously, I would want to know if they would allow my family member the right to make their own decisions (i.e. continuing meds)
    I would want to know if they provide continuous care when the end is near.
    How fast their on-call nurses respond in urgent situations.
    If their nurses have standing orders that provide for situations when current pain/respiratory meds are not effective (sadly for my great-uncle, who was 95 years old & was dying cancer w/bone mets, his hospice nurses could not provide adequate pain relief - their MD would not approve anything different or even a higher dosage, which was very ineffective.)
    And I would ask questions specific to my loved-one's illness (i.e. what they would have in place to manage resp distress).

    I don't know if these things pertain to your situation or not; they are just things I would want to know if it were my family. Again, my deepest sympathies. May God bless you all.
  11. 0
    First off, I'm really sorry about everything that you are going through with your Dad. My thoughts are with you and your family.

    You so do your research about the local area hospices. I worked for a hospice as a secretary and now I am an LPN and about to be an RN. I would NEVER refer a loved one to the hospice I worked at because they are very $$ oriented (the company, not the actual hospice nurses). Some hospices will try to get people signed onto hospice because they are numbers driven.

    Another thing...you do NOT need a physicians order for a hospice to come out and talk to you (as long as there is no evaluating to see if they are appropriate). If you end up choosing a hospice and let's just say you do not get along with your nurse or social worker or CNA. You have the choice to ask for a new person.
  12. 0
    Depending on your situation, you might be able to consult with palliative care through your hospital, they might be able to help you with thinking through what treatments to continue with or not. They are less specific than hospice but also symptom management based.

    My heart goes out to you and I wish you the best. Hospice was wonderful with my mother and grandmother. I hope they also bring you comfort.


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