Did you ever bring up hospice and have families get bent out of shape?

Tweety, BSN, RN · Jul 12, 2006

You have to assess the families readiness for this suggestion. They have to accept the diagnosis is terminal.

To many hospice means "they are on their way out". I heard this just the other day from the wife and daughter of a patient who was 88 years old with CHF. He was put in a hospice and they took him out and brought him to the ER with "weakness" and the docs admitted him with a bogus diagnosis of UTI so he could get to a nursing home.

Many misunderstand hospice.

If nothing else, you have planted the seed and perhaps eventually they will come around. Shame on this MD for not being more realistic with this family and giving into their denial.

I think you meant well by your patient and I applaud that. Patient advocacy is never wrong.

Critical LPN · Jul 12, 2006

You have to assess the families readiness for this suggestion. They have to accept the diagnosis is terminal.
To many hospice means "they are on their way out". I heard this just the other day from the wife and daughter of a patient who was 88 years old with CHF. He was put in a hospice and they took him out and brought him to the ER with "weakness" and the docs admitted him with a bogus diagnosis of UTI so he could get to a nursing home.
Many misunderstand hospice.
If nothing else, you have planted the seed and perhaps eventually they will come around. Shame on this MD for not being more realistic with this family and giving into their denial.
I think you meant well by your patient and I applaud that. Patient advocacy is never wrong.

:yeahthat: It is always difficult to be the bearer of any option other than what the family "wants to hear". Hospice is so much related to death rather than, a possible better way to relieve the discomforts of a painful lingering life. The M.D. s of this world do need to take more resposibility of discussing the realities of the patient's prognosis. :madface: No matter what anyone's belief systems are, once facing discomfort in a hussle, bussle non familiar and cold hospital room verses home hospice or Hospice outside care, most patient's seem to prefer a place to be close to family/friends without visiting rules,and to be made as comfortable as possible. Also, sometimes approaching the family with "their" needs first(the tired long ca regiver member:bluecry1:), showing the options that they will be able to be as little or much involved with their loved ones care, and yet provide them time to get away without feeling " guilty" when they are not next to the patient every minute, will sway the decision. The biggie is just letting all involved know we all care for their loved ones time on this planet and what do they think their love one would want( if patient not able to voice).

Always the patient advocate as in trying times, sometimes wishes other than the thoughts of irrational, denying, vengeful, tired, scared, or decent God fearing folk, are not those desired or best for the patient and it takes a patient , skilled, and quick on their thoughts nurse to find the "right" time to discuss the option. :nurse:

caroladybelle, BSN, RN · Jul 13, 2006

Only several hundred times.

In every family group, there will be several family members that think it is a great idea and several that will react like you suggested euthanasia. Much like suggesting morphine for pain, some are okay, and others are looking at you like you are asking Grandma to shoot up with heroin

Critical LPN · Jul 13, 2006

Only several hundred times.
In every family group, there will be several family members that think it is a great idea and several that will react like you suggested euthanasia. Much like suggesting morphine for pain, some are okay, and others are looking at you like you are asking Grandma to shoot up with heroin

This is where it is like a ballet------to say the right thing------at the right time------to the right person/persons . And then, having it all blow up in your face. :argue: It is always a time that brings all of us closer to our own mortality too. How do we as nurses feel? Sometimes what we feel---is mirrored back to us in the reactions we receive from others because we have the difficulty of having to be the "strong one who really is scarred to face death". :no: We are made to face our own beliefs and demons (if you so believe) then to try and repress all of this each time we are made to be the one to bear the news to patient's families. Many times we have ourselves allowed the patient a little spot in our heart:icon_hug: that makes us question the outcome or why are we the ones who have to do this? Tough spot for anyone. :banghead:

4evrhisma · Jul 28, 2006

I'm a pre-nursing student. I decided to change careers when my son passed away earlier this year from a rare neurodegenerative genetic disease, and a nurse brought up hospice services to me during his last hospital stay when he was 12 mos old. At the time I was pretty open minded, and he was DNR. I wasn't always sure where I stood. We were going to lift the DNR for the week of surgery. Honestly, we weren't ready for hospice. Two nights after the first nurse brought up hospice, another nurse, who I hadn't met the four weeks he was in the hospital, literally told me I was in denial, and didn't agree with me changing my mind about the DNR, and needless to say I was irate she was passing judgements on me. I still don't think the second nurse was right to bring it up the way she did, I feel it's one thing to give options and another one to bring up strong personal opinions when she's not in my shoes. When the surgery was postponed, and he was on oxygen, nj tube, 20 hr. feeds, twelve meds, suctioning, and nebulizer treatments every four hours I decided to take him home, and that hospice was a good choice. I was still his primary caregiver and was trained on how to do everything, and hospice called almost every day, delivered meds, offered spiritual counseling, everything. I think a lot of people do misunderstand hospice and what they do, because I sure did before. I'm glad the first nurse that brought it up planted the seed. He passed away a month later, in his sleep, no pain, and at home, and with dignity, and I had been able to be his mommy for a month and take care of him. I'm eternally grateful to hospice, and I can't picture doing it without them, also with their bereavement support. I guess what I'm trying to say is that there's a good time and bad time to bring it up, and it's hard to tell what that time is, and also a good way and a bad way to go about it, but it may be good to give the option and walk away so they have it if and when they are ready.

EmptytheBoat · Jul 28, 2006

Hospice is not about acceptance, it is about denial. We all have denial,

we may only hope for the acceptance of eternal life.

WickedRedRN, BSN, RN · Jul 28, 2006

The M.D. s of this world do need to take more resposibility of discussing the realities of the patient's prognosis

:yeahthat: From personal experience. FIL was seriously ill and I knew his prognosis was poor. MD would NOT level with the family. I tried gently to get hubby to understand the situation, but during his last hospitialization MD painted a rosy picture to MIL and hubby ("he will get better after we do the paracentesis") and not addressing the big picture. A social worker came in to talk to MIL and brought up Hospice. She was alone and hysterical when she called me. I called hubby and he was angry as all get out. Thought someone was not being honest. (which is true, MD wasnt) but he was going to vent it out on the SW. I knew she was right and had to mediate. This whole mess could have been avoided if only the MD would have come in and talked honestly to family.

I dont understand why it is they cannot do this?

Critical LPN · Jul 28, 2006

I'm a pre-nursing student. I decided to change careers when my son passed away earlier this year from a rare neurodegenerative genetic disease, and a nurse brought up hospice services to me during his last hospital stay when he was 12 mos old. At the time I was pretty open minded, and he was DNR. I wasn't always sure where I stood. We were going to lift the DNR for the week of surgery. Honestly, we weren't ready for hospice. Two nights after the first nurse brought up hospice, another nurse, who I hadn't met the four weeks he was in the hospital, literally told me I was in denial, and didn't agree with me changing my mind about the DNR, and needless to say I was irate she was passing judgements on me. I still don't think the second nurse was right to bring it up the way she did, I feel it's one thing to give options and another one to bring up strong personal opinions when she's not in my shoes. When the surgery was postponed, and he was on oxygen, nj tube, 20 hr. feeds, twelve meds, suctioning, and nebulizer treatments every four hours I decided to take him home, and that hospice was a good choice. I was still his primary caregiver and was trained on how to do everything, and hospice called almost every day, delivered meds, offered spiritual counseling, everything. I think a lot of people do misunderstand hospice and what they do, because I sure did before. I'm glad the first nurse that brought it up planted the seed. He passed away a month later, in his sleep, no pain, and at home, and with dignity, and I had been able to be his mommy for a month and take care of him. I'm eternally grateful to hospice, and I can't picture doing it without them, also with their bereavement support. I guess what I'm trying to say is that there's a good time and bad time to bring it up, and it's hard to tell what that time is, and also a good way and a bad way to go about it, but it may be good to give the option and walk away so they have it if and when they are ready.

:madface:First let me say how sad I am to here of your loss. It is never a good or bad time to tell anyone of hospice care, especially if it is for a child. None of us expect to outlive our children. I am glad you did get to spend your time with him to the end and had those final moments to share all the good and the bad times and the preciousness of his impact on your life. How sad it would have been to have not to have had that time. Bless you and yours.

This is the very problem I spoke of earlier in this thread, no one nurse or healthcare person should ever presume that you are "wrong". By telling you this even if you had been in denial the whole time did no more to make your decision for hospice care any more desirable. I do not know of the surgery you decided on as not covered, but obviously you had hope instilled by a physician that it might help and therefore added to an already confusing time for you to the point that you lifted the DNR. Thus, what are you supposed to do? Hospice is not always presented as a way to provide a possible better life(as giving you help with the caregiver role and providing comfort and support), as much as it is presented as the endall way to give up. It should be better presented in pamplets, by doctors, etc. as an alternative. Unfortunately, our healthcare system as well as insurance companies want it to only mean the end of life.

What if in the middle of pallative care, a cure for the disease or condition is found or you agree to allow yourself or love one to be a test person for a possible cure that is just over the horizen but do not want abusive, invasive care and non regard for comfort to be denied to that person because the traditional medical practice will not allow this? Can we not be a little more compassionate as well as supportive to people who are stuck in the middle?

No matter what we feel as so called professionals ( I say that in that the case of the second nurse you portrayed in the matter), we should never allow ourselves to decide when there are realatives around(no matter if the problem is true or not), we have the right to think for them. After all, it is not like you had not ever considered it or had never allowed yourself to make your child a DNR in the first place. It is only our job to try to find the best time(such as if you here family members in discussion of their confusion on what to do as they are tired of all the tubes, wires and pain but are frustrated that they have no choice in their minds) to open a discussion in a way that we let the caregivers feel they can tell us their true frustrations and fears of being judged as giving up, that we have the oportunity to allow for open dialog to offer a different way(hospice or pallative care). Trust me as a person who cried out for help as my mother was ill over several years but always slipped in under the time frame of possible rehabilitive care each time she was in the hospital (but refused feedings and was a DNR) and put in the ECF as I just was unable to handle her care, weight, 24 hour watching (and taking care of her apt. she refused to give up, her bills, making sure all the meds were given right as she had freq. allergies to certain things, and crashed whenever they would change things as some new doctor was assigned at every place she went to) and the feelings of guilt of not only my own self, but the hospital staff would put on me as well as my mother (who I had found from a past neighbor felt I should basically give up everything to care for her in the future) since I was a nurse. Many things suffered and still suffer today (marriage, career advancement) as although she has passed now, I was not allowed to ever take advantage of any help by hospice even though they approached me, to find later that the insurance would deny as on medicare and one private plan that allowed only for meds and acute physician care,( I was told a first they would in her case allow )and then would not even after the wonderful nurse came an visited her and told me she felt she was "in pain" just as I had thought, (but because she ((mom))could not point blank say so due to speech problems) the doctors would not order anything except tylenol for fear of over medicating her but at the same time, doctors kept ordering repeatedly, tranquilizers and sedatives(that she had always had a problem with (and was on her chart)and I had found her head first in the toilet in her room from over sedation. Still stating pain and holding her side as staff nurse and myself got her into bed, but unable to hold self up in the wheelchair next to the toilet after two different ((anti-psychotic meds that were ordered that day had been given one hour before )) were given) . I had by that time not been able to work for several weeks as the hospital would call everyday for me(they could not understand my mother's stroke aquired broken speech or she would be having delusions ( again after someone would change her usual meds)that only I seemed to be able to deal with or of course, the problem with everyone treating her like she was this old lady who had already lost her total mind and thus calling her "sweety-pie" and treating like a baby just because her speech (did not show her still functioning mind.) They would call from the ECF when her still strong willed and sometimes very arrogant behavior(when she felt that no one understood she had a business mind under all the illness and bad speech problems) ,to have me "deal with her" even after I had reported to all staff and put up signs to how and what she could eat and how best to get the meds for her if they had problems, and that most of all, she did ,if not being improperly drugged, knew for the most part what was going on( and absolutely did not like condesending behavior toward her or treated like an infant) and if given time or give her a tablet to write on, could explain her needs. Then everytime her breathing changed or the ECF thought it was her last hours, I had to be able to run at a moments notice. So I could not afford the high price of keeping her there and having hospice(quality and assisstive care) as insurance still covered right now for 30 plus more days till I (in my spare time-hah) could arrange for what and how I was going to do to pay for her care after that,( my home was a mess by this point and my mother was allergic to my cat and of course my husbands shift scedule required altered sleep time ((my husband, though trying to be supportive, did not have the best relationship with my mother(she hated anyone who was taking me away from her no matter what she said to my face I latter found out from others), as well as diagnosed himself with a large cyst in the brain that caused seizures if he got too stressed out or did not get at least 8 full hours of sleep a day)) that I felt terribly caught in the middle and though I loved my mother and it was my duty to care for her,( I loved my husband too) It is difficult to be a sole care giver when the person will not allow anyone else to help as well as the guilt you feel as the relative(and in my case, also a nurse) to get support in this healthcare arena. The hospice nurse was so supportive, even though not allowed to be on the case. She did all she could to be my connection to the doctors to please give my mother a better form of pain control as I had showed her a note that I had spoken with my mom weeks earlier when at that point I was afraid they just did not get it,(doctors before they committed her to the nursing home because they were disscusted she would not allow feeding tubes or constant tests she knew her stroke ridden body could not handle any longer she said and before I knew her mind would be clouded and I might not be able to fight for her rights if not written, signed and dated ahead of time so as not to look like I was just trying to off her out in the eyes of the doctors) "do you want pain meds even if it means further decrease of your mental ability or death or do you want to tough it out as the medical field may not give you anything if they feel it is going to cause you an earlier demise? The second question was again about her choice of feedings or hydration and if told it was to help her , did she want it?---To both she had said(by note)" she realized by choosing not to be given fluids or food, she was already speeding up her death but that after each stroke and now the constant choking to try and eat, the pain in side from "hunger"(and possible mass found on one of the x-rays in the hospital that she chose not to explore further) to her organs that did not get better with feeble attempts to absorb anything with most of food coming back up or choked down my "windpipe", I just want to meet maker with as little time as possible that was left without the constant pain been battling for a while now but now I can't deal with any longer and since no one seems to be able or have time to decifer my speech and notes that I'm now to tired to write Due to my already depleting body, I just want to be comfortable. NO MORE PAIN,NO MORE TESTS." 4 days later she was transferred without me being called until she reached the nursing home ( and I found later,while I was settling paperwork on her behalf ) that I had been led to believe I would be there with her to prepare for this move as she still was not sure of the home she wanted to go to. I was there 12 hours a day each day at the hospital and every time they called during the night, yet they did not let me know they moved up the plans, (QUOTE--Dr. states if she is DNR, and refuses X-ray, she leaves now.) While I understood reason, I was told one more day as she was being given meds to see if it would help abd. pain. I go to visit and to my surprise, boom she was gone. Great as then after I get to the ECF, I'm informed they were told I had been called and they just told my mother I could'nt(the ECF now) be reached cause they did not have my number. (guess what, mom thinks I had her dumped here as no one can understand her and the signs I made at the hospital for her did not get transferred, she feels abandoned.)

Her mind was now coming and going (I to was told things that angered me--"She does not know what is going on"--could it be because she is weak even if by her choice from not being fed? ), the times she was alert, she was angry and started feeling that even I must be lying to her as I had promised I would try to keep her comfortable(that was a hard one as I still kept up all her bills, did not get any sleep trying to be some kind of a wife, ran between banks to get business done to keep up all the bills coming in, maintained her aptment miles away, and had to pick up her mail everyday, etc. and tried constatly to get ahold of doctors to relay her complaints of pain that were put off ), I realized the time was going slow and painful for her and only I and the hospice nurse who really seemed to care but whose hands were tied due to not allowed by the insurance, were having trouble getting the doctors to order something IV or subq. for pain as she could not swallow at all by this point(one doctor through the NP they used in the ECF had the gaul to quote back that "she said she did not want any IV fluids"--not taking into account that she meant to sustain life, not to avoid comfort measures.) The hospice nurse had said to call her anytime if I needed assistance, and I did as I was at the end of my rope. She (mom)was moaning and also, the side she had pain in prior to her really getting bad, was even more tender to touch and positiong and now I was staying at the ECF 24 hours a day doing all the care as by now they gave up giving any meds as she could not swallow and they knew she as well as I had wanted myself to be there as although she had stated she had made piece with her maker, was afraid she would choke to death if left alone. Thus I stayed, and God bless the wonderful hospice nurse(who still was not going to be getting any type of compensation but felt it was wrong to have put the offer to me but not allow me to have it, got through to the doctors( although another two days of wait to get through the system) and said enough was enough. She had witnessed the same tell tale signs of pain,(look up signs other than spoken in any pain management book) and demanded they at least realize they were being selfish in holding back basic request of patient to "protect their fears". That day my mother was placed on a subq. type morphine drip at an ordered amt. with instruction to me by the doctor as well as to the nurses to give a 'relief' dose whenever turning, pulling up in bed or anytime patient moaned, grimaced hard "as we really don't know just how much pain she might be in if she can't talk and of course is so weak from the dehydration/malnutrition , that she could not respond except with HR, inc. resp., moaning if she wanted to."

Thanks to all the wonderful hospice nurses out there. It is a hard and mostly thankless job as most of the time you do not get to see the fruits of your labors like those of us who get our patients better and send them home. You mostly just get the call saying your services are no longer needed as those you have helped, are gone. Gone but never forgotten as are our praises to you for all the help you give and even in this case(my mom) had a heart to not let the caregiver be bullied by the system even when the system forbade your help.

It is hard to know where, what is the right time or when, but thank God, there are those out there who know when to offer, don't press, and wait for the asking and champion on when asked for their help. We all love you and thank you from the bottom of our hearts. I realize lack of continuity of care is a major part of hospital desenitization to needs of family and patient in this day but at least the hospice teams can help, no matter the route you choose(all care yourself) or assisstive to make death a part of life not the death of the caregiver to from being totally torn to shreads from being all things to all people and trying to take care of business to.

RNDYN2CU · Aug 5, 2006

Yeah, I compare Hospice to Pediatrics in the family dynamics of shooting the messenger. It's displaced fear, flying at you with anger daggers:trout: . Just put on your invisible nursing cap and stay objective, utilize what you learned on the psych beat, stay objective but not clinical. You can be an understanding human with compassion as well as excellent advice, but you got to feel out your crowd! As we all know, each family is unique and we are all here for the patient, the one who is dying.

RNDYN2CU · Aug 5, 2006

that's funny and true, "grandma shooting up heroin." I say Roxanol and they look at me all mad, the "M" word, like you're saying the truth which rattles the denial barrier huh? It happens allll the time, family after family, just got to keep teaching and respecting/

I really try to treat each family as if they are the only one's I have to worry about, i don't care if it's the 3rd admission that weekend- this is THEIR time, their only mom or dad or whoever. and this will be me someday....