Should I be mad at Hospice? My mother...

[Roland]

was admitted to in patient hospice and died about a week later. At the time of her admission her Dr. (and a second opinion) had given her from two to six months to live (she had non small cell lung cancer that had spread to her liver). We decided to take her to Hospice due to the fact we were not able to control her nausea at home, and the hospital could find no physiological cause on a CT scan (such as an impaction). Her pain was under under very good control with BID MS Contin (30mg) and immediate release morphine pid (15mg).

The very minute she was admitted the nurse said that the Dr. had ordered Haldol for her nausea. I had never heard of Haldol being used in this context, but figured that the Dr. must be aware of some "off label" application of which I was not aware. That night (her first) mom became progressively more agitated and suffered from both visual and auditory hallucinations (she had never before experienced anything like this). Finally, after struggleing to keep her in bed (she kept wanting to get up due to various hallucinations) I called the nurses and they gave her a shot of Atavan and she slept. From that point on Mom took a distinct turn for the worse. Furthermore, the nurses continued to give her more Haldol almost everytime she would even sit up. Two days after admission they performed an enema and this seemed to releave much of her nausea, and she experienced no more emesis. However, the nurses continued to give her Haldol although they did at least admit that it was also being used for agitation in addition to nausea. Mom, was extremely weak by this point not even able to hold her head up (although she pleaded that I place her on a bedside commode rather than suffer the indignity of a foley or diaper).

I became more concerned after telling my nursing instructor who reacted with alarm at the use of this drug in this context. He said that to his knowledge Haldol was not used for nausea, and espcially not in elderly women on opiates. I confronted the nurses at hospice, and one admitted that Dr. XXXX used the drug to "keep the patients comfortable because most of them were not so fortunate as my mom to have family there twenty four/seven". What galls me is that this was such a beautiful facility with amenities far in excess of any residential care facility that I had ever visitied before. However, there were few if any patients out of there beds to enjoy the facility. My mom died ten days after admission and I feel that she may have been "cheated" of potential quality time with myself and her two year old grandson.

Is the use of Haldol in this context common at other in patient facilities?

[mother/babyRN, RN]

So very sorry at the loss of your mom....Haldol as an antiemetic was a new one on me....When I was in cardiac care, it was not ever used that way, but given the way serendipitous effects of meds ( such as cytotec or terbutaline with pre term labor, for instance) happen, it wouldn't surprise me......

[fab4fan]

Hospice nurse here...yes, I have seen Haldol used as an anti-emetic. One of the mantras we have is "using traditional meds in non-traditional ways." Certain things work in the terminal setting that would not necessarily be appropriate otherwise.

Your nursing instructor was out of line to say that, and I am afraid added to your grief. He/she should stick to his/her area of expertise. Terminal/palliative care is very complicated and takes a lot of time to learn...I think of it as another type of critical care.

As far as "chemical restraint"...well, if she was that agitated, that may have been the only way to keep her from hurting herself. I don't think I can say much more since I wasn't there. I will say that not everyone has a quiet and peaceful death, unfortunately, no matter what the intervention.

Condolences to you and your family.

[ktwlpn, LPN]

Hi,Fab....Roland posted in another thread the following..............

>>>>>>>>>>>>>I guess one of the opinions that I formed while. watching my mother in hospice (in patient) was that length of life should be included as a core value in their mission statement. That is to say that in addition to attempting to palliate suffering, that every thing reasonably possible should be done to facilitate the maximum possible lifespan of the patient (unless the patient expresses an express desire to the contrary). Some of these interventions in my mom's case could have included:

1. Use of IV fluids and or parentenial feeding until the underlying reason for emesis (in her case it appears there might have been a partial fecal impaction that didn't show up on the CT scan at the hospital) could be identified.

2. Use of radiation to treat her primary lung tumor. This is often effective in relieving the spinal cord compression from which she suffered (she was on dexamethasone for this and appetite stimulation).

3. Bathing along with range of motion exercises. While in hospice she received only one bath despite my requesting them daily. Since I stayed with her virtually all the time day and night I know that they were not offered.

4. Less aggressive escalation of pain medications. In her case she was placed on escalating doses of morphine delivered via a pump/IV site. Only two weeks before admission she was fully ambulatory (she even drove herself to a retirement campground in the eastern part of the state).

>>>>>>>>>>-I know that with my own loved ones and my private duty hospice cases towards the very end we did nothing that would cause any discomfort for the dying.We did not turn my mom the last 12 hours-and I don't think she got a complete bed bath for the last several days.Good mouth care and hands and face and peri and pits...But NOT a lot of rolling around and juggling and shifting.Maybe the staff assumed that since he was at the bedside that he was providing some of that care? (that's a pet peeve of mine-assuming families are doing that kind of care or even that they want to)..The other measures he mentions are in opposition of what hospice is -aren't they? It sounds to me like the patient and the family were not ready for hospice at all......It is your right to take yourself or loved one out of hospice isn't it? I wonder if they knew they could do that....I hate to see families upset like this-and people with a little nursing education making judgements when they really don't understand....It's a shame that instead of grieving for their loved one they seem stuck on blame....It's so hard to let go and admit that you can't do anything for your loved one.....and accept what comes

[fab4fan]

Hospice does not work to prolong life nor shorten it. Some things that might make sense in another setting would be contraindicated in hospice.

IV fluids with severe emesis: all that's going to do is cause more emesis and discomfort. Uusually, diagnostic studies are not done unless there is a good chance that there could be another palliative intervention. You can take an XR and see that there is disease progression, but what are you ultimately going to do with that info. It's really just information for information's sake most of the time.

Radiation is not usually a first-line intervention for palliation. It is used at times, but not routinely.

Hygiene should have been provided, but ROM exercises could have caused more pain.

Pain meds are titrated based on the assessment of the pt pain, subjective and objective. Sometimes they do seem to escalate quickly, but that often happens with rapid disease progression. The goal is to keep the pt as pain free as possible while maintaining maximum function.

Roland, I am sorry for your pain. It's hard to understand if you do not work in the field why things are done certain ways, but believe me, hospices follow very strict protocols for treatment.

I would encourage you to take advantage to bereavement services offered by the hospice. They may be able to address some of your concerns.

[ktwlpn, LPN]

Great post,Fab-thanks...Hospice is really a wonderful thing.Maybe the posts here will help clear up some misconceptions.Many times all we really can do for our loved one is give them the gift of a"good" death...

[fab4fan]

So true...unfortunately, sometimes unresolved issues for the pt can cause agitation/restlessness. Spiritual pain needs to be addressed as well.

And some people just do not die peacefully, no matter how hard you try. I've found that people tend to die the way they lived; don't know if anyone else has seen that.

[kids]

I was writing out this really long post about my Mom's rapid deterioration with nsc lung ca. I just can't do it. I will summarize.

Mom's first appt with the Onc was on 3/1/02, she passed on 2/28/03. She was actively receiving treatment and was responding. On Feburary 11 she had chemo. On Feburary 14 she had routine interval scans that showed tumor reduction and confirmed that she had NOT developed any mets. Over the next 14 days she progressed from living independantly thru confusion to non-verbal and death.

[STM]

Originally posted by aimeee

Haldol is sometimes used as part of a whole cocktail of meds which is used to tone down an over reactive system to bring nausea under control...we sometimes use suppositories in our home hospice which contain ativan, haldol, reglan, and benadryl. This often brings relief to people for whom nothing else works. Other hospices use metaclofen suppositories (I don't know the precise composition but I know haldol is one of the ingredients.) I won't form an opinion of the appropriateness of its use in this circumstance because there is no way I could know the full picture, not having seen her complete MAR, not having seen the patient, not having a history to look at.

What I do wish for you now, is to find a way to peace in your heart and heal the grief and the anger that you feel. I hope you will pursue some bereavement counseling. If you have too much anger with this hospice to accept their services, you can ask for that support from another hospice. Most will be very gracious about accepting you into their support groups.

We sometimes used ABHR suppositories if nothing else seemed to help for restlessness, nausea, and have lots of success.. acombination of Haldol, Benadryl, Reglan, and Ativan, it also comes in creams now. The combination seemed to work better than any of the drugs given alone.

Every patient is different and can have different responses...

I am so sorry you have had to go through all this. My first patient was my mother in law, and it was so very difficult to be objective when all I wanted to do was put my head by her pillow and comfort her and pray for it all to stop. Take care. Keep us posted.

[LydiaGreen]

I am certainly no expert in hospice or palliative care. As a student, I have discovered that I thoroughly enjoy palliative care and have tried to receive as many of these assignments as possible.

With regards to IV fluids and parenteral nutrition. My father agreed to it at first... then he ripped the NG tube out twice, and as soon as they started an IV, he would rip it out before they left the room.

IV fluids and parenteral nutrition can be painful when a person is near death. As body systems slow down and cease to function, the intake has to go somewhere - pulmonary edema is not a pleasant experience for anyone, especially someone who is already dying. Sometimes, it is kinder to not administer IV fluids and parenteral nutrition.

I truly am sorry for your loss Roland. I had two years to watch my father suffer and debilitate. I had two years to watch him being slowly stripped of everything that made him him. Allowing him to die, not forcing the IV fluids and parenteral nutrition on him (I had the POA with regards to medical treatment), was an act of compassion. He didn't die in a moment, or in the course of two or three weeks - he died over the course of two years. I would not have wanted to prolong his suffering not one more moment. He was ASKING to die. So, I let him go. I know this might be hard to hear, but your mother was lucky to have been driving and enjoying life just two weeks before her death. Take comfort in the fact that her suffering wasn't as long as it could have been.

[Roland]

It is nine months later and I have some additonal perspective on the issue, but my opinions remain largely the same:

1. My wife who is also a student nurse (ADN) did a clinical rotation in the SAME hospice a couple of months after my mother's demise. Her experiences confirmed many of my concerns. Of the eight patients she helped care for SIX were on Haldol. In addition, the nurse to patient ratio ranged from 15 to one to more than twenty to one ( some nights and many weekends). She even went so far as to relate the fact that her husband was concerned about theses practices and was told that many nurses there AGREE, but that this North side Indianapolis, hospice's management was more concerned about the appearence of the facility (which is BEAUTIFUL) than they are patient care. In addition, my wife was told by two nurses that whether or not they will admit it that the hospice DOES utilize aggressive, terminal, sedation on the non, private pay patients (Medicare) who are deemed to be near the end. They said that this was because they only had a very limited number of Medicare beds, and that these were in high demand and thus had to be cleared out quickly. In addition, while working at a nursing home as a student nurse/CNA (on the weekends while in school) I talked to an LPN who QUIT that facility because of the very types of concerns that I had.

2. I agree that we were probably NOT ready for hospice in my mothers case. We have since learned that her problem was probably related to a compaction, related to her heavy morphine usage. I decided on hospice because I didn't realize that her insurance (Medicare plus Blue Cross) COVERED home health care. In addition, the hospital was going to discharge her without the compaction being resolved (her oncologist a friend of the family told us that when he reviewed her CT scans that he could see an illieus, that had been missed at the hospital).

3. When my mother was admitted to hospice she was completely calm, and conversational. However, AFTER she was given the Haldol by injection (at the INSTANT of admission while I was there) she became delusional and agitated (within thirty minutes). She was given two subsequent (booster) injections of Haldol within several hours, and finally given Atavan which induced sleep. After her admission she never recovered NEARLY the level of conciousness that she had before that first Haldol injection (again which she lost within minutes). She also displayed "tardive dyskinsia" type movements the next day after admission picking at her bedspread constantly, something she had never before experienced. Despite my concerns she was given two additional Haldol injections the next day.

The nursing home that I work at part time as a CNA/student nurse is not a good facility. They have been the subject of numerous complaints, and are constantly subject to state inspections (sometimes I feel like I am working on a Depend changing ASSEMBLY line, last night I had 18 residents to care for because someone called off, with eleven showers to give!). HOWEVER, the care that is given there is vastly superior to what I witnessed at the hospice described above. This may sound cold, but it's not about my MOTHER. Instead, I am concerned about all of the other patients that go to that facility thinking that they (or their familities so thinking) that they will get the best available care. Indeed, to someone who only looked at external appearances (and not at care/nursing issues) the facility looks like a four star hotel. To me that's a big part of what makes the whole thing so insidious. Unfortunately, my wife is of the opinion that we can't afford to "rock the boat" with complaints against the "establishment" while we are still RN students (she says that the reputation as trouble makers could haunt us in the future trying to get jobs or getting into grad school).

[mjamesRN]

I agree with Canoehead on this one.

Haldol is for violent agitation (if it occurs) in the active dying stage. Any nurse who has given it knows that Haldol will zonk someone for long periods of time and many elderly patients are senstivie to it: hallucinations, etc...however, at near death these can also be common symptoms. And in the case of this thread, mets to the liver: increasing ammonia levels may have contributed to the agitation as well, but overall, Ativan and Morphine should have done the job, not multiple doses of Haldol. I would question this seriously.

[Guppy]

I work in a Hospice and we also use Haldol for nausea...it is not out first, second or third choice and it is usually used for relief of end-stage restlessness and for nausea. It is a difficult situation to have watched a loved one trying to get out of bed it alarms most family members and I too am so sorry for the death of your mom take comfort in that she is happy and safe and you now have one more guardian angel.