just need some input.

  1. Ok heres the problem. New pt. 73yo dx, esophageal ca with mets to lungs, liver and bone family can't except pt is terminal. They refuse comfort care in hopes father/husband will get strong enough to go to another state and get chemo.,and go home. When discussing advanced directives family wants everything possible done except DNR. Pt knows he's dying but goes along with families wishes and does what they want. I have a hard time talking to this family when they have such high hopes and expectations and pt knows he is going to die. They only want him to have minimal pain meds because they're afraid he'll be "snowed" and not be able to participate in PT/OT and get better.The man is in no doubt in severe pain. His prognosses looks grave How do I answer there questions about how he's doing or progressing when all they want to listen to is the good stuff and I want to say he's dying let him go in peace and pain free.
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  2. 17 Comments

  3. by   Nurse Izzy
    Remember you're tha patient advocate. It's his wishes that take priority, not the family's. Yeah, I know that's harder than it sounds, but he's the one dying. Maybe it would help if he were able to talk to them or if someone from psych, social services or hospice could talk to them? Just my opinions...
  4. by   deegal.lpn
    Thanks for the reply. I had thought about our social service worker but she's out of work right now R/T quad bipass. I asked co-workers they only commented how sad it was but thy were'nt much help.
  5. by   cutesabutton
    Just wondering have you had a private session with the family and told them just that. That he is dying. Has the patient told the family he is aware he is dying and what means most to him? How about the chaplain or minister or priest? Have they been of any support? Maybe asking the patient (alone) what are his wishes NOW, in view of his diagnosis and pain. Maybe asking him if he wants you to tell his family what he cannot say to them. Therefore in their presence he just goes alone with them. There sounds like there is probably a lot of guilt or unfinished business on both sides. That I think needs to be talked about. But until they accept reality and his wishes I don't see how it will ever be.
  6. by   renerian
    Many times the patient becomes passive and goes along with the family to ensure the family will not suffer guilt that they did not try everything to keep their loved one alive. If he goes along with them then esssentially he is agreeing with the plan of action. If he shows signs he does not agree in the families presence or not, try to have a meeting with all parties present. Tough call I know.

    Good luck,

    renerian
  7. by   KMSRN
    Where is the physician in this process? I know sometimes they are not willing to speak in a direct manner to the family, maybe you can encourage him/her. You could explain to the family that CPR and resusitation is meant for otherwise fairly healthy people who have a sudden crisis and that the patient's body is just no longer able to sustain life and if he is "coded" he may survive for a while on life support but will not come back to a functional level. Again, the physician should be saying all this. Do you have a palliative care unit or team - they could be helpful. If not maybe hospice could help. It is unethical to allow a terminal patient to be in pain for the sake of his family. If all else fails you may consider an ethics consult.
  8. by   NRSKarenRN
    couple of things come in mind here:

    1. primary nurse needs to find out patients wishes promptly while family not present in room.

    2. physician needs to be updated re situation if not already done.

    3. family meeting needs to be held involving physician, clinical manager, patient and nurse to advocate for patients desires.


    areas i would address:

    a. pain assessment:
    .....the joint commission on accreditation of healthcare organizations (jcaho) announced in august 1999 that it would require hospitals, home care agencies, nursing homes, behavioral health facilities, outpatient clinics, and health plans to implement ways to assess and manage pain.

    the new pain standards, which are being included in 2000-2001 jcaho standards manuals, require providers of healthcare services to
    *recognize the rights of patients to appropriate assessment and management of pain,
    *assess the existence and if positive, the intensity of pain in all patients, record the results of the assessment in a way that facilitates reassessment and follow-up,
    *determine and ensure staff competency in pain assessment and management, and address pain assessment that supports the appropriate prescription or ordering of effective pain medications,
    *educate patients and their families about effective pain management, and address patient needs for symptom management in the discharge process.

    what pain management tools has your facility developed for patients and families?? use them!!!

    b. pain management

    need to educate patient and family what to expect re pain and effedtive management patient should not be snowed. poor pain management impedes healing process.

    comfort care does not mean no care---just the opposite---maxaminizing patients life and comfort. can be provided in home health, pre hospice program if family will desiring treatment or hospice. many individuals can not face inevitable but once home change their mind.

    good pain article:

    challenges in pain management at the end of life
    http://nursing.about.com/gi/dynamic/...01%2f1227.html

    other pain resourses i've identified in previous post:
    pain management-- see post 15.
    http://allnurses.com/forums/showthre...ain+management

    if patient and family at odds, call in facilities ethics committee.

    c. life expentency/discharge planning

    physician needs to outline course of treatment for this illness and followup arrangements needed. what would happen if aggressive treatment not persued. discuss patients quality of life issues here what's important for hom needs to be stressed by patient's nurse with support from clinical manager. discharge planning--referral to home care, supplies needed etc to be reviewed.

    some times these conferences need to be broken up over several days to give time for patient/family reflect over issues presented. some familys need concrete written info re pain management before they buge on an issue. some never change and you have to accept that you've presented options. if you keep the patient the focus, this sometimes helps.

    good luck...let us know what happens.
  9. by   Agnus
    Originally posted by renerian
    Many times the patient becomes passive and goes along with the family to ensure the family will not suffer guilt that they did not try everything to keep their loved one alive. If he goes along with them then esssentially he is agreeing with the plan of action. If he shows signs he does not agree in the families presence or not, try to have a meeting with all parties present. Tough call I know.

    Good luck,

    renerian
    I agree. Sometimes they don't need us to advocate. A decision to go along is an automous decision. We may not like it and feel the patient is under duress. However, we do not know the family dynamics. He reasons to comply with family wishes are his own. Even if we thing they are not "good" reasons.

    It is the same when a patient refuses pain med and we "know" they need it.
    This is a VERY difficult call
  10. by   Jenny P
    Karen has given you some good info and resources; be sure and follow through with that advice.

    I have had both bad and good experiences dealing with families like this so be sure and follow all of these: your PATIENTS' wishes and desires; your hospital's policies and procedures; AND the doctor's wishes (hopefully, he isn't wishy-washy when it comes to dealing with the family here).

    My BAD experience was with a family that refused to let us give the patient any pain meds and refused to let us tell the patient how sick he was (although he KNEW and told me so!); they also refused to let other family members (he had siblings who wanted to see him) or friends visit the patient and never let him have a single get well card (he had TONS of them coming each day!)-- they'd open them "once he got home"! I was one of his primary nurses and one night he started "talking" to me (he was trached, so he mouthed some words and wrote other words) about how sick he was. I "documented everything" he said and all of my responses; however, we were saving all of his notes for the family (per their request-- oh yeah, they also took notes about us whenever they were there). They saw something he'd written, then got upset with me and reported me; also made the doctor write an order that NO ONE was to discuss the pt's. illness with him, AND that they should read the chart each day!! I got "counselled" and written up, and also jerked off the case. The patient remained a full code, without pain meds, and all alone except for his wife and 2 sons as his only visitors until he died!

    A more recent experience was perfect: family didn't want patient to die; wanted no pain meds and full code for terminal 80+ yr. old gentleman. After listening to what they wanted; and explaining that pain meds could be adjusted to keep the patient comfortable and alert, they did agree to allow us to medicate him. Then the next day we addressed the whole "full code" issue; presenting the true facts of codes (that it isn't like on TV; we are really only able to save about 1/3 to 1/4 of the patients we code and that in older patients we often break the ribs with chest compressions, etc., causing more pain, discomfort, and possible complications). They discussed this among themselves and finally said we should code the patient but no chest compressions. A day or 2 later they decided DNR/DNI, comfort care only; most families will come to this conclusion when they have the time to decide on their own and not be forced into it. I wasn't there when this gentleman died, but I was told it was quite peaceful and his family members were there, they later sent us a thank you note for helping them through this.

    These are a few of my personal experiences; it isn't always easy to deal with families who don't understand that death is part of life. Hope this helps.
    Last edit by Jenny P on Feb 3, '03
  11. by   deegal.lpn
    Update- after a meeting with the family and doctor today (and many tears) The family decided to go with comfort measures. Thanks for all the good advise
  12. by   KaroSnowQueen
    Thank God for that! I get so upset with these families who refuse proper care for their familes by denying the truth and the docs who go along with them. The dying PATIENT is the one needing care and kid gloves and TLC, not the family who puts their needs above the patients (whether or not they realize it).
  13. by   Agnus
    thank the gods commonsense prevails again.
    It just @#$$ me when patients must suffer because of some misguided know it all relative. Some times I wonder how they cannot know they are torturing the "loved one"
  14. by   kids
    Originally posted by deegal.lpn
    Update- after a meeting with the family and doctor today (and many tears) The family decided to go with comfort measures. Thanks for all the good advise

    HALLELUJAH!

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