What can I do or say???

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    I have a patient 94 yo, patient. Cannot walk. If he could he would sleep himself into oblivion. However, his family insist on dragging this poor man for half the day. They force feed him breakfast lunch and dinner. Patient has severe dysphagia. It's getting worse everyday. I explain that it's because of the decline in his status. I explain everything a million times. I explain nutritional changes, food for comfort, aspiration precautions. Family refuses to let up! They keep asking me why I can't fix it. Why don't I give him a pill to help him swallow. They believe there is something stuck in his throat even though I explain that he just isn't able to swallow well anymore! The poor patient moans and coughs...them force feeding him is just making him suffer. I stay there for hours each visit trying to explain to them disease progression, aspiration pneumonia, mechanics of dysphagia, hospice role. They don't listen! I don't know what else I can do to stop them from choking their dad every meal. Please give advice.
  2. 14 Comments so far...

  3. 4
    Be compassionate. Be persistent in your education. Model behavior for them. Document your teaching and their responses. We cannot force people to accept the terminal decline of the loved ones, we can only TRY to help them. If there are no other disciplines visiting it may be time to bring in other voices to help the family adjust.

    Good luck.
    IowaKaren, Vtachy1, LookUp2Sky, and 1 other like this.
  4. 2
    Sometimes having the medical director or attending speak with the family helps. Social work as well.
    IowaKaren and tewdles like this.
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    How about an update on the poor guy? I think I would have made an anonymous call to the office of the aging.
  6. 3
    I explain the risks of aspiration pneumonia and how hard that would be on the patient.

    Sometimes when the patient is transitioning I explain to families when their loved one is refusing to eat/drink that the brain has a little light switch that it flips off when we are dying. The response that says FEED ME!!!! FEED ME!!! Or I havent had a drink all day! Is turned off. Unlike us who would go crazy without a drop of water or food over a few days for the transitioning patient those urges and needs just seem to be numbed. Usually that will help the family find peace.

    It sounds like they may be having trouble coping with the dx and are trying to control "what they can" as a means of feeling less guilt or pain. Sit them down - tell them they are the best... Tell them how strong they are and that its not their fault and that they have done everything right. See if you can get them to open up about what they are afraid of and offer emotional support.
    IowaKaren, tewdles, and Sun0408 like this.
  7. 3
    At my Hospice we are taught to use this phrase. "Your loved one isn't dying because they're not eating, they're not eating because they're dying.
    cbennett3, IowaKaren, and tewdles like this.
  8. 3
    Quote from pfeliks
    At my Hospice we are taught to use this phrase. "Your loved one isn't dying because they're not eating, they're not eating because they're dying.
    That is an awesome phrase...
    Always_Learning, IowaKaren, and tewdles like this.
  9. 0
    Sounds like you are dealing with compassion fatigue, so make sure you are looking out for yourself! As far as the patient/family situation goes, continue to teach and document the education provided. I agree with the other posters in that a visit from the attending or hospice physician may be in order. Sometimes, people will much more readily take the same information if it's given to them from a physician. Also use your social work and chaplain resources for backup, and make sure you are all on the same page. And just remember, although it's easy for us as clinicians to see the outcome, sometimes families just cannot face the reality of a situation until they absolutely have to.
  10. 1
    Quote from ktwlpn
    How about an update on the poor guy? I think I would have made an anonymous call to the office of the aging.
    I got him a speech consult. Had the social worker talk to the family (she is useless though). He passed away last night. It was the saddest death I've yet to encounter. His son was hysterical on the verge of insanity. When his son called me and said his dad felt warm and was "breathing funny" I knew it would be this was it and that it would be bad. So even though I was not on-call i rushed to his house. For his son it was a "sudden unexpected death" even though I had been explaining to him his dad was dying for months and months. It still shocked him. When I told him his dad would die shortly the look of absolute shock on his face killed me because it meant I did not successfully prepare him. I didn't do my job right.

    I walked into the house after I got the tearful hysteric call from his son that his dad's "stomach stopped moving". I came in the house and heard the screaming from his son. I can still hear his sobbing and wailing and hysteria in my head telling me to "feel it! There's a little bit of breath! A little bit of breath!!! I hear his heart I hear it!!! Listen again!" I stayed for 3 hours. His son wanted me to give his dad a full bed bath. Change his clothes. Of course he helped me and sobbed and talked to his dad the entire time. There were also 15 other family members silently sobbing but accepting of his passing. Afterwards his son asked me to do full treatment on his dad's heel wounds because they were due to be changed that day and "they would get worse". I explained that he would not get worse, but of course obliged him because if that made him feel better then why not.
    tewdles likes this.
  11. 0
    Awesome thread


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