Imposing compassion?

  1. A hospice agency I recently worked for struggled with the idea of holding families accountable for compassionate care. Because I thought we should hold families accountable, I was looked at as narrow-minded. For example, I cared for a dementia patient who was a holocaust survivor, who me, suffered night terrors. Seroquel actually helped, but his family stopped giving it to him, because he was too sedated, and they were not willing to try any other meds as they feared side effects. The social worker on the case identified that this family's preference was lucidity vs comfort. The IDG ssaid we can't impose our values on the families. So his night terrors continued for the couple of months he was in our care, until he developed what appeared to be an acute incarcerated hernia, after which he died 3 days later. With the hernia, he was moaning, and saying "it hurts". The family fought me on medicating him, even after I told them his prognosis if he did indeed have an incarcerated hernia. I finally told the family it wouldn't be right to keep him at home with an incarcerated hernia without medicating him, and they let me give him a dose of Morphine. A nurse went out the next 2 days, to reinforce pain management. My manager called me into her office, wanting to know why I thought I had the right to "impose my own values" on this family. (The family complained to the social worker, and the social worker complained to my nurse manager, again saying this family valued lucidity). The MD thought the patient should be medicated every 4 hours, but says we are powerless to hold families accountable for managing symptoms. It was a difficult work environment, because the same sort of situations came up repeatedly with my 1-1/2 years with this company. There was no team approach to overcoming barriers to symptom management, because the team did not accept as it's responsibility, overcoming barriers to symptom management. I'm afraid to go back into hospice nursing, without knowing what I can do in this kind of a situation? Has anyone had similar experiences, and if so, what can be done about it?
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    About TLDey

    Joined: Jul '11; Posts: 13; Likes: 6


  3. by   Noey67
    We as Hospice Case Managers can not fix it all. I understand the struggle with this as most nurses do in this speciality.

    I had a family that believed in holistic medication only. NO pain meds despite having severe pain on a 1- 10 scale being 10+ almost constantly. We were denied keeping a comfort kit in the home, and all the family would medicate the patient with was herbal remedies.

    This was my scenario. I was "at my wits end". It was care planned, and I met with the family and patient on several occasions. They all agreed to stick to the current regime that they allowed only.

    I built a sense of trust, offered the best adjunctive treatments I could that would be accepted. Heating pad, methol rub for pain, cooling measures for temps and oxygen. This is what the patient wanted, this is what the family wanted.

    In the end, the patient died not a very comfortable death, but this is what the patient and family desired.

    I had failed on my personal goal of keeping this patient comfortable? No. This was Mrs. S's death not mine.

    One of the most difficult aspects of our specialty is not imposing our own set of beliefs and ethics onto other. Sometimes we just have to document education and document what was offered and declined to CYA.
  4. by   leslie :-D
    Quote from Noey67
    One of the most difficult aspects of our specialty is not imposing our own set of beliefs and ethics onto other. Sometimes we just have to document education and document what was offered and declined to CYA.
    i agree...
    but what about the patient's wishes?
    i too, have been in this dilemma too many times.
    while i have families commanding me to not administer any pain meds, i always bend over to the pt and ask if s/he would like pain relief.
    if pt says yes, i administer it.
    i just CANNOT listen and watch someone writhe and scream in pain...
    in spite of ferocious opposition.
    i've even had docs tell me not to give if family doesn't want it.
    bull****...if the doctor really means it, i suggest they dc all pain med orders.
    they never do.

    my focus is on the dying pt.
    if pt says to just go along with family, i honor their wish.
    but if they want pain relief, pt is my first priority.

    i never got in trouble, either.
    sure, i heard a lot of guff...
    but in the end, families were relieved to have pt die quietly and in relative peace.
    they realized in hindsight, that it was their anxieties that clouded objectiive decision making.

    even if i did get fired, i'd rather that then letting someone die an excruciating death.
    for whatever it costs, i can still live with myself.

  5. by   TLDey
    Thank you for responding. Did you wonder, with your client who only wanted herbals & adjunctives, whether there was an element of self-abuse involved (psych/emotional problems)? (Or, whether the pt really wanted relief, but was afraid to go against the family)?

    I have an easier time when the pt is able to express their wishes, but when the family is deciding for suffering for the person who can't express their wishes, that's when I'M at wits' end....
  6. by   leslie :-D
    Quote from TLDey
    I have an easier time when the pt is able to express their wishes, but when the family is deciding for suffering for the person who can't express their wishes, that's when I'M at wits' end....
    for the non-verbal pt, we hospice nurses need to be even more alerted for signs of pain.
    behavorial changes (agitation), muscles tensing anywhere on body (esp face, neck, hands), restlessness, detached
    w/company present.

    and yes tl, there are pts who purposely refuse pain medication as a means of self-punishment.
    people have all sorts of beliefs and all we can do is encourage and educate.
    we all need to continually strategize and restrategize, in order to attain our goals for the pt.

    don't give up, your pts need you.

  7. by   Noey67
    The patient who was seeking treatment with herbals etc was alert. This was her wish. It was very clear.

    Patients who are not able to communicate and show non verbal signs of pain, and the family prohibits proper pain relief this is a different situation. This is actually more common than the last scenario. So much instruction has to be done when the only real barrier to effective treatment is family not "wanting to OD, or dope up" their dying loved one. I have gingerly pointed out signs of pain non verbal etc. and often have had to explore families or rather dpoa's concerns that may be a barrier. There have been times patients are actively dying, in pain showing classic pain and family is still afraid to medicate with morphine or any other medications.

    Often is just education and support that can assist with effective pain relief

    Only once, have I had family out right deny pain medication on a end stage dementia patient who was moaing, grimacing and showing pain as at least a 6 on a 1-10 scale. I conducted a one on one family meeting with the dpoa who was not allowing pain medications. I showed her the non verbal pain scale that I use to document levels, the increased pulse and outward agitation. I educated the dpoa that one of my goals is to educate and instruct on pain medication options and support for such symptoms. If outward declination is made, then I document what I offered, what was instructed and it becomes part of the permanent medical record that xyz dpoa declined intervention. The accountability approach with a tender kit glove was enough with some support " The decision is completely yours, but I must document that I offered xyz approach and this has been declined." It will be part of the permanent medical record as this shows my attempted intervention and the reason it was not done....

    It was enough to sway the head strong dpoa. But I also have to accept the possibility that this may not of turned out this way. If that would be the case, all IDG members including the ordering physician would be notified and included within documentation. An APS report should be done in the event that neglect has been identified ( possibly... ) just to CYA.

    I have learned early on in my career, that I can not always impose my feelings or beleifs on those who have the legal say so. To do otherwise could be assault. BUT! I would do everything within my power to document, explore, intervene with all IDG and MD and document... document document.
  8. by   MunoRN
    It's not unheard of for family members who have decision making rights to request that patient's not get pain meds during the day so they stay awake and are more lucid while they are visiting. If you have to defer to the POA then we obviously aren't talking about a huge potential for lucidity anyway. I usually explain (without being too accusatory) that their role is to make decisions on behalf of the patient that reflect the decisions they truly believe the patient would make, not the decisions they would like the patient to make so that their afternoon visit doesn't feel like a waste of time because the patient napped through part of it.

    Obviously it's important to be tactful when discussing this, particularly since what you may really want to tell them is that they are a horrible person for subjecting their family member to severe pain so that they can be awake for your whole visit, plus the patient deserves to sleep this afternoon since they only slept two hours last night because they spent most of the night scared and anxious because they don't recognize their surroundings and there is nobody here they know, even though we offered to set up a nice bed for you in the room and you declined so you could get a good nights sleep to make sure you were plenty awake enough today to torture your poor family member. Re-phrasing that is probably best.
  9. by   ErinS
    The hardest thing I have ever done in my career as a nurse was walk into a pt's home who was losing so much weight her tailbone was literally showing inches out of the skin. She had severe pain, but her boyfriend, who was her POA, would not allow us to increase her pain meds above 0.1mg dilaudid an hour. I still have nightmares about our inability to manage this woman as her tailbone literally disintegrated. She lived for 4 weeks after I saw, at which time she was 50 pounds, and closer to 35 by the time she died.

    However, we can not force our beliefs on people, and I since that time have decided I have to just let it go. I help everyone I can, but I know that sometimes there will be nothing I can do, and that eventually my pt will be out of pain, one way or another.
  10. by   Noey67
    In the end... we can not force our beliefs or opinions one way or another. We can not treat patients to our standards without approval from the patient or DPOA.

    The best and only response I have done to clear my conscience is to do what I posted earlier. Document everything. Also have that hard to do interaction where you don't judge ( although how hard is it not too, but keep your opinion to yourself) that " I understand and respect your concerns regarding xyz patient. However, I must be honest with you, that I have to document that I have spoken to you about options xyz that have been declined. Mind you, I understand and respect your opinion. But, for potential liability issues on my end, I must document resources offered and that they were declined to be part of the permanent record."

    This puts the accountability on the loved ones.. NOT THE NURSE and it very respectfully lets the family know this is their own doing and the nurse or hospice team is not responsible. In the end... this clears my mind, knowing I did what I can and also released the team and myself from claims.." you didn't take care of mom"... or whomever.

    Accountability is often skated passed, but this is no skating by the pain med with holding dpoa who whatever they are.
  11. by   TLDey
    Hi all, I know I read an article, I think from one of the hospice associations, that said caregivers (even though they may have the legal DPOA, which I think some people are power-tripping with), they are still accountable to the society at large within which they live. So if someone's really "out there" with their belief system, it's not just a "me & my values" against "them" thing, but "them" against "society", like whatever the reasonable, rational society member would find prudent. I think theses are "legal barriers", that it's good and right to try to figure out how to overcome in order to help the helpless. I'd love to come across that article again. Why is hospice about the only specialty that can't stand their ground on what would be considered compassionate relief of suffering? If the family member isn't reasonable in negotiating a plan of care, and simply refuses to follow that plan, I don't know why we can't take action... I've seen caregivers get p***ed off when it was pointed out that it was unacceptable e.g. to not turn their loved one but once a day M-F when the hospice aide comes, to the point where they revoked & went to the hospital, thinking to show hospice staff to be ignorami, but it then backfired and the hospital staff were able to get a compassionate plan of care initiated. I don't know why we don't fight for a compassionate plan of care, like as a team approach, instead of sitting in IDG saying, "well, there's really nothing we can do, if the family doesn't want to". Maybe I need a field where right & wrong is a bit more cut & dry... TL
  12. by   TLDey
    I might add too, that the woman who thought we were insane to tell her she needed to turn her husband, also did not believe she needed to manage his pain. He said he wanted narcotic, and she said of course she would give it to him, but she did not. The next RN visit out, the patient thru facial grimacing, gritted teeth and sweaty brow, said he was "okay" with just Tylenol, (apparently changed his mind) and she was smiling triumphantly.
  13. by   Hospice Nurse LPN
    I can feel your pain, but we have to accept what the pt or POA wants. I once has a pt w/ Stage IV uterine CA. I just KNEW she was in pain, but the husband stated that she didn't need narcs. She needed to suffer the way Jesus suffered on the cross. I tried everything even had the SW and Chaplain make extra visits. I even told them that Jesus suffered on the cross so we didn't have to. All to no avail. She died about 2 weeks later. So sad, but I can rest knowing I did everything humanly possible for the pt.
  14. by   tewdles
    I will always advocate for bringing families with unrealistic or even inhuman ideals of "comfort care" into the IDT meeting. Certainly, we may not change their minds, but that is the ultimate support for the hospice professionals visiting in the home.

    Sometimes, patients and families have requests or expectations that a particular agency may not be able to meet. It is not unreasonable to recommend a transfer of care to an agency that may more closely share the philosophy of the pt/family. In my mind that is a heck of a lot better than having an unpleasant death, a disgruntled family, and a traumatized staff to deal with for months after the books are closed.