Question about Hospice and D/C of meds

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I am a student nurse on rotation at an extended care facility. I was assigned a patient with Huntington's Disease. He is in he last stage of the disease, but alert and oriented although he can only respond in one or two words. He seemed to be doing well except for a bout of C-Diff which most of us beleive to be cleared up. His family has pretty much abandoned him, no visits, no contact. The patient is isolated the majority of the time, as are the others. (we are not in the best facility as you might have guessed) My question is, last week he was put on hospice. When I was passing meds, everything in his chart was d/c'ed except the antibiotic for the C-Diff and Akwa tears. Even his PRN pain meds like simple Tylenol were d/c'ed also. His glucerna shakes for extra calories were discontinued (people with HD can burn up to 5000 calories a day) He has become even more withdrawn and not interested in eating. He was on some pretty powerfull drugs, including 150mg of Effexor XR that he had been taking for the last 5 years. Instead of weening him off these meds, they just upped and stopped. Is this normal?? My pt. the ther day complained of being in A LOT of pain. I myself had to be weened off Effexor and it was not pleasent. Pain, brain shocks etc. Do they just stop meds when you go into Hospice?? They won't even give him anything for pain. The nurse said it may be the family's choice to do this. I can't see how you would let a pt. die in pain like this. I was just wondering if this is a normal accurance with Hospice? I really feel for my pt.

Here is an excerpt from the physician's desk reference on the use of Effexor with Huntington's - I too was wondering why he was prescribed it and did a little research a few weeks ago:

Other, newer antidepressants we have used with success in patients with Huntington's disease include buproprion (Wellbutrin), venlafaxine (Effexor), and nefazodone (Serzone). These all require dosing several times a day. A new formulation of venlafaxine, Effexor XR, may be given once a day, and nefazodone is sometimes given in a single bedtime dose, despite the short half-life. It is often difficult for depressed patients, especially those with cognitive impairment, to adhere to a complex medication regimen. Therefore these drugs may not be good first choices if there is no responsible family member who will help make sure that the patient takes his medicine.

I'm sorry to hear about your mother, have you tested for the gene yourself?

Or department of human services, something. It's a violation to just put a pad under someone.

I'm also not surprised that the family is uninvolved, not at all. Virtually everyone abandoned my family when my mom was dying--from huntington's. I can't begin to describe what my childhood was like.

People in our area have a bit better awareness now, and my brother has had a much more compassion from the community. Yup, we are in round two with this rotten disease.

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Specializes in LTC/Rehab, Med Surg, Home Care.

In my family experiences with HD, which include my mother, her sister, my cousin, and my brother, cognitive abilities were seriously impaired. My mother, cousin, and aunt have all died, and by the time they were in a nursing home, none of them were ever "alert and oriented". Although it was not to the level of say, end stage dementia, scores on a mini mental would have classified them with severe deficits.

Yes, I very much realize what this disease is. It's the disease that robbed my mother of the person she was and in turn gave my family a nightmare. It's the disease that caused my grandfather to kill himself, leaving behind 6 children. It's the disease that will make sure my brother's children never remember a father.

He is unable to work, drive a car, care for his young children, balance a checkbook, or make any rational decisions. Anti depressants (although he has not tried effexor) have done nothing to help his fixations, depression, or inappropriate behaviors in public, and no I'm not talking about the chorea.

This HD family understands why family members don't visit. Does it break my heart? Yes, I'm an LTC nurse and it very much breaks my heart. But the families that leave don't leave because they are jerks and want to get on with their lives. They leave because they are broken hearted themselves and don't know what else to do.

Why are you shocked to hear of an HD patient "Alert and Oriented"? He understands everything I say to him and can answer my questions. People don't realize that this disease is like being trapped in your own body. Treat people with HD in a dignified and caring manner throughout the course of their lives. Even when communication is severely limited or not possible, people with HD continue to understand if they are treated with dignity and respect, as do their families.
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I'm sorry for the sorrow in your family. :crying2: I hope I didn't upset you. I have been researchingthe disease a lot, mostly because I have never heard of it. I am also doing an exstensive project on it for school. I can see your point of view. I am just very saddened because I don't think his son could realize that just him coming and reading to him would make his life right now. Watching a love one die is horrific, but I could never let my family memeber die alone and lonely. It's hard for me to understand. The conversations we have had (long and slow mind you) he mentions a lot about his son and it breaks my heart that his son wants nothing to do with him. Do you go to any support groups for HD?

In my family experiences with HD, which include my mother, her sister, my cousin, and my brother, cognitive abilities were seriously impaired. My mother, cousin, and aunt have all died, and by the time they were in a nursing home, none of them were ever "alert and oriented". Although it was not to the level of say, end stage dementia, scores on a mini mental would have classified them with severe deficits.

Yes, I very much realize what this disease is. It's the disease that robbed my mother of the person she was and in turn gave my family a nightmare. It's the disease that caused my grandfather to kill himself, leaving behind 6 children. It's the disease that will make sure my brother's children never remember a father.

He is unable to work, drive a car, care for his young children, balance a checkbook, or make any rational decisions. Anti depressants (although he has not tried effexor) have done nothing to help his fixations, depression, or inappropriate behaviors in public, and no I'm not talking about the chorea.

This HD family understands why family members don't visit. Does it break my heart? Yes, I'm an LTC nurse and it very much breaks my heart. But the families that leave don't leave because they are jerks and want to get on with their lives. They leave because they are broken hearted themselves and don't know what else to do.

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Specializes in LTC/Rehab, Med Surg, Home Care.

I hope that in your research, you have found that the man you are working with is rare to be A&O x3. This is simply not the norm. My brother works with an expert in the field, known internationally, and with an HD center of excellence. I'm aware that HDSA states that language comprehension is retained as is retention of family members and friends.

Just don't forget that executive function is affected: planning and cognitive flexibility. Abstract thinking is lost as is the ability to initiate appropriate actions and inhibit inappropriate actions.

Depression is but one psychological symptom--the one you may be seeing now. Addictive behaviors, hypersexuality, OCD type behaviors, aggression, short term memory loss, the ability to learn new information, etc, etc. Hallucinations and delusions are not uncommon in the latest stages, and according to our MD, many HD pts. scream uncontrollably during their last few weeks of life.

This does not add up to A&O!! So yes, I guess I really am surprises, and I hope in your project you will make sure to include this information. This is NOT just a physical disease. Not by a long shot!!

I'm sorry for the sorrow in your family. :crying2: I hope I didn't upset you. I have been researchingthe disease a lot, mostly because I have never heard of it. I am also doing an exstensive project on it for school. I can see your point of view. I am just very saddened because I don't think his son could realize that just him coming and reading to him would make his life right now. Watching a love one die is horrific, but I could never let my family memeber die alone and lonely. It's hard for me to understand. The conversations we have had (long and slow mind you) he mentions a lot about his son and it breaks my heart that his son wants nothing to do with him. Do you go to any support groups for HD?
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This is NOT just a physical disease. Not by a long shot!!

i agree with you 1000%.

can't say i have ever cared for an a&o hd pt in hospice.

while my pts have been aware of their environment, affects/presentation was very primal, disinhibited and sooooo very tragic.

the saddest part, is they are painfully aware of their losses, even in the presence of acute mental deficits.

i've heard those screams.

op, if your pt is a&o, and according to you, still eating, albeit slowly?

is he truly end stage and appropriate for hospice?

from beginning to end, hd typically lasts 20-30 yrs.

anyways, do not take your 1 and only pt with hd, as the norm and the prototype for all hd pts.

it is truly one of the more devastating diseases, that ultimately robs pts of their lives...

but not until their body, mind and soul have been completely pulverized.

leslie

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Yes I too was surprised as why he was put on hospice. Honestly, I feel they are just trying to off him. He is still brought to the dining room to eat pureed food and was admitted in 2003. He was walking up until 8 months ago and driving right before he was admitted. His primary admittance (so it says) is BPH and UTI. I am quite confused. Thank you for further educating me on HD. Does anyone know why the pt.'s scream towards end of life?

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Specializes in LTC/Rehab, Med Surg, Home Care.

Progressive diseases such as HD and alzheimer's qualify for hospice, the point at which the pt. will be put on hospice varies. My facility has several people on hospice who have been there for several years. Every six months the MD has to go through the process of saying why they still qualify.

On the other hand, other hospice pts. have been taken off because of their improvement, only to be put on it again later. Most of our hospice pts. have indeed died within 6 months.

The most likely reason for starting hospice services now are a significant decline in his abilities.

Again, I hope you contact the appropriate authorities in your area, as it sounds like there are a number of violations. Anyone who has a concern about the care, possible neglect or abuse of a pt. should do this.

I also don't understand why morphine, ativan (or haldol) are not available on hospice.

Yes I too was surprised as why he was put on hospice. Honestly, I feel they are just trying to off him. He is still brought to the dining room to eat pureed food and was admitted in 2003. He was walking up until 8 months ago and driving right before he was admitted. His primary admittance (so it says) is BPH and UTI. I am quite confused. Thank you for further educating me on HD. Does anyone know why the pt.'s scream towards end of life?
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The whole thing is with reporting this is that we are basically told without saying it that we will get kicked out of school. Two quarters ago a girl called state for a clinical site abusing a pt. The next week the dean kicked her out and was mad because we lost that site.

Progressive diseases such as HD and alzheimer's qualify for hospice, the point at which the pt. will be put on hospice varies. My facility has several people on hospice who have been there for several years. Every six months the MD has to go through the process of saying why they still qualify.

On the other hand, other hospice pts. have been taken off because of their improvement, only to be put on it again later. Most of our hospice pts. have indeed died within 6 months.

The most likely reason for starting hospice services now are a significant decline in his abilities.

Again, I hope you contact the appropriate authorities in your area, as it sounds like there are a number of violations. Anyone who has a concern about the care, possible neglect or abuse of a pt. should do this.

I also don't understand why morphine, ativan (or haldol) are not available on hospice.

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Meds taken prior to being put on hospice are often continued... if the med falls under the dx for hospice care, then hospice will pay for it (so they should be buying that Effexor for this pt). Other meds can still be continued, but if the med doesn't fall under the dx that they are on hospice for, the facility/res/family/insurance will have to pay for it if it is to be continued.

If I was this resident's nurse... I'd call the hospice during business hours et get ahold of his case manager. Tell them what I want, why, and see how everything fits together... then write the telephone order for it. Rarely do I ever talk to an actual doctor for hospice patients, I just talk to the hospice nurse, we make a plan, see if its covered, then send that order to the doctor to sx!

But! Being as ur still in school, u don't want to rock the boat or attract any attention. So my advice would be to keep ur mouth shut about it and just call the Omsbudsman. While at clinical maybe ask the charge nurse why they are doing this and that, just be inquisitive, try to learn the reasoning behind what they are doing...

The hospice plan of care should have a rather long list of standing orders you can use as well: Morphine Sulfate SL, Ativan, Atropine SL (for excessive secretions), these are the most common orders initiated.

It sounds like these 'hospice nurses' that you are seeing may actually be CNAs? I'd call the case manager et inform them of the behavior, but once again, ur still in school so keep a low profile on matters such as this imo.

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Thanks for your response. I was inquisitive with the charge nurse and she couldn't really tell me much, the only thing she said is hospice takes care of it and that it is out of their hands and it may be the family's choice. She also stated she was concerned and couldn't understand why they would D/C everything down to the Effexor. But it didn't seem like she cared to be an advocate for the pt. either. This is why I am having second thoughts sometimes about becoming a nurse. I thought nursing was about compassion, comfort, caring, healing. None of which I have seen from any nurse I have been on clinicals with. All they talk about is raises, money, time off. I don't understand why they are there?? Why did you become a nurse. To me, being anurse is more than passing meds. They all sit around after med pass etc. It's frustrating to me, and a few of the girls I am in clinicals with work in hospitals or are CNA's other places and make it sound pretty bad too. I feel like the nurses I am shadowing act like they are to good to give someone a shower or too busy to just hold someone's hand. It's frustrating.

Meds taken prior to being put on hospice are often continued... if the med falls under the dx for hospice care, then hospice will pay for it (so they should be buying that Effexor for this pt). Other meds can still be continued, but if the med doesn't fall under the dx that they are on hospice for, the facility/res/family/insurance will have to pay for it if it is to be continued.

If I was this resident's nurse... I'd call the hospice during business hours et get ahold of his case manager. Tell them what I want, why, and see how everything fits together... then write the telephone order for it. Rarely do I ever talk to an actual doctor for hospice patients, I just talk to the hospice nurse, we make a plan, see if its covered, then send that order to the doctor to sx!

But! Being as ur still in school, u don't want to rock the boat or attract any attention. So my advice would be to keep ur mouth shut about it and just call the Omsbudsman. While at clinical maybe ask the charge nurse why they are doing this and that, just be inquisitive, try to learn the reasoning behind what they are doing...

The hospice plan of care should have a rather long list of standing orders you can use as well: Morphine Sulfate SL, Ativan, Atropine SL (for excessive secretions), these are the most common orders initiated.

It sounds like these 'hospice nurses' that you are seeing may actually be CNAs? I'd call the case manager et inform them of the behavior, but once again, ur still in school so keep a low profile on matters such as this imo.

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Does anyone know why the pt.'s scream towards end of life?

hyperarousal is a common manifestation with hd's.

the #1 psychiatric disorder with hd, is depression.

and i believe i already shared, that suicide rates are high.

combine the depression with affective disorders/deficits = painstaking, desperate screams of despair.

once you have heard these screams at eol, they echo in your ears for yrs after.

spend time with these folks...

and you just know, it's all about the anguish they endure.

leslie

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Specializes in LTC/Rehab, Med Surg, Home Care.

Then you have an ethical dilemma, don't you? Report the abuse, as you will be required by law to do when you are licensed, or ignore for the sake of your nursing education.

Did you do the CNA course and/or were you ever certified as a CNA? If so, I believe you are a mandatory reporter.

Reports of abuse to the Ombusdman's office are confidential unless you give permission to be identified.

The whole thing is with reporting this is that we are basically told without saying it that we will get kicked out of school. Two quarters ago a girl called state for a clinical site abusing a pt. The next week the dean kicked her out and was mad because we lost that site.
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