Symptoms of end-stage Parkinson's? When should hospice step in?

tewdles, RN · Dec 12, 2012

Actually, hospices can reach out to patients if their family requests the information visit.

If the patient and family are in agreement with hospice, and the criteria for admission is met the hospice professional will then contact the PCP and request a medical referral and orders to admit.

You also could ask the provider about hospice. You would have a much better idea of how that provider might react to that request. Some docs are not very nice about that sort of thing while others appreciate your input.

Good luck and thanks for advocating for your patient!

zelda2012 · Dec 13, 2012

Thank you. However, I'm not so sure this lady's husband would be very receptive to the suggestion of hospice care. He is elderly too, and she has no advance directives so since he is her spouse, he is in control. Their children live out-of-state.

He was threatening to call 911 while we were waiting for the MD to get back with us today (just called up to work to check and see how she's doing.. MD NEVER responded). I told him no, please don't do that. I showed him her V/S were WNL and she's not in any apparent distress, so he settled down. I told him if he really wanted to, he's well within his rights to take her to the hospital (just PLEASE don't dial 911, yikes). But he said "She's been to the hospital 6 times this year." I feel for him.. I really blame her doctors for not being more straightforward with him about her disease progression and her decline, and that she's NOT going to get any better. He doesn't know any better and of course wants to just hold on to his wife. My coworker said she refused food/meds/fluids all 3-11 shift, wouldn't even open her lips.

tewdles, RN · Dec 14, 2012

Don't you have care conferences with this spouse and the care team?

smurfynursey · Dec 14, 2012

could you recommend her for palliative care, if the husband wasn't willing to accept hospice?

(just a thought, I'm pretty new to adult hospice)

QEOLAdvocate · Dec 15, 2012

To answer your question, like a previous poster said, hospice can be called by the husband, and they will come out (a marketer typically) and explain what hospice is, what this particular company provides, and hopefully answer any questions the husband or the patient may have.

OP, you are right, she is declining, and I would say that if hospice cannot be initiated than a conversation needs to be had with the patient and husband regarding changing her code status, she is already suffering so much, and in her last moments, she doesn't need the trauma of CPR.

--- I'm an ex hospice case manager, just giving you my 2 cents :)

NC29mom, ASN, LPN, RN · Dec 16, 2012

I can tell you from experience..parkinson patients seem to go on and on and on. Now that's not to say some don't progress more rapidly than others..... but most seem to live many years, even at the end stages. I have watched my own granny through the progression. If the pt was ambulatory, in my opinion..she would not be appropriate. I guess with this particular patient, it will be a watch and wait type deal (only bc of recent dx of pneumonia). I'm not shocked her Dr would increase her aricept .... though we know as hospice nurses the med is doing nothing but causing side effects at this point. I regularly have to remind our doctors, aricept is for MILD TO MODERATE Alzheimer's ...... this patient probably has more of Meet Body Dementia, as it commonly accompanies Parkinson's. Sounds like somebody is going to have a lot of education to perform....

LMTRN · Dec 25, 2012

Hi there, I work at an ALF and I have a resident who has pretty severe Parkinson's. 87 years old, has had pneumonia twice in the past 3 months, 95 lbs soaking wet, can't do any of her ADL's besides feed herself and even then we usually have to step in and feed her. She can still get up and walk (or shuffle, rather) on her own, when the mood strikes her. Sleeps all the time. She's actually not appropriate for our ALF as we only have a standard license, but that's another story..
She was hospitalized a few weeks ago with pneumonia, but has been doing better since returning to our facility. Today, she was very lethargic, difficult to rouse, resting tremors seemed worse. Rubs in bilat lungs, sometimes sounding like she had phlegm caught in her throat. Percussed her back, tried to get her to cough up secretions but she couldn't. V/S and SpO2 WNL. Mainly, she was just zonked out all day. No apparent respiratory distress. Her husband is freaking out.. I don't think her neurologist or primary MD has been completely honest as to what to expect with Parkinson's Disease and the progression, or the complications (recurrent pneumonia being one). As of the time I left work today we were still waiting to hear back from her primary and hopefully get an order for at least a CXR.
She is a full code, which freaks me out. I can't imagine doing CPR on this tiny lady.. her ribs would crack in half. Her primary MD ordered physical therapy for her last week.. I guess to palliate her husband. Surely her doc knows no amount of PT will help her get better. She also saw her neurologist last week, who merely bumped up her Aricept dosage. You'd think as a physician that deals with this disease all the time, they would notice her decline and speak to her husband about it..
I know only MD's can order a hospice consult, but would I be out of line to suggest this to her doctor? Honestly, to me she looks like she is dying already, albeit slowly. I feel, at least if hospice is a no-go, she should be made a DNR.

It sounds like her PPS would be below a 40, my hospice would be able to make that work.

I would just keep working on the husband r/t quality of life. Some hospices have special volunteers, 'survivors', people who have had family members in the program. It sometimes helps to hear it from someone who has "been there, done that".

Good luck.

MomRN0913 · Dec 25, 2012

I can tell you from experience..parkinson patients seem to go on and on and on. Now that's not to say some don't progress more rapidly than others..... but most seem to live many years, even at the end stages. I have watched my own granny through the progression. If the pt was ambulatory, in my opinion..she would not be appropriate. I guess with this particular patient, it will be a watch and wait type deal (only bc of recent dx of pneumonia). I'm not shocked her Dr would increase her aricept .... though we know as hospice nurses the med is doing nothing but causing side effects at this point. I regularly have to remind our doctors, aricept is for MILD TO MODERATE Alzheimer's ...... this patient probably has more of Meet Body Dementia, as it commonly accompanies Parkinson's. Sounds like somebody is going to have a lot of education to perform....

I have a patient now who has had Parkinson's for 21 years. After many falls, becoming bed bound, unable to eat ( he takes pleasure feeds). The wife decided to make her husband hospice now that he is progressing faster than ever, is in his 80's and would need a peg tube.He started out as what my boss called a " dead in the bed Fred". But he's not over the past 2 weeks. He's more responsive, understands what you are saying, can express a few singular words and now hugs and kisses me when I come in. He's comfortable, he is surrounded by love, and they take intone day at a time. With his minimal ability to eat or drink, he doesn't have long. And they have good support through the hospice benefit.

Pride/hardwork17 · Dec 27, 2012

I am an admitting Hospice RN and I know that the Medicare and Medicaid guidelines are strict but most of the time what counts is not a single diagnosis but "the whole picture" such as weight loss, dependence on more than 4 ADL's, multiple hospitalizations, wounds, infections and most of all, the patient and family's goals of care. If the goals of care are palliative rather then curative and the patient is showing progressive decline, the pt will most likely qualify for Hospice care. Continuation of Hospice services will depend upon how the patient is doing when he/she is recertified for Hospice.

areensee · Jan 1, 2013

You are never out of line advocating for your patient. However you should realize that the husband will need to agree, and if he's not ready for this, it won't happen. As far as when the patient is ready? First of all, an evaluation can be done by a hospice agency at any time. If the patient doesn't meet criteria, they will tell you. The primary criteria for hospice is that a physician is willing to certify that in his/her opinion, given that the disease follows an expected course, the patient has a life expectancy of 6 months or less. If a physician agrees with this, the hospice agency will do a complete assessment to confirm that the patient is eligible for hospice services.

I understand your frustration with the full code status. This is one of the reasons I chose to leave the hospital and get into hospice nursing. I once had an experience of a patient who was dying from brain cancer in the hospital, but the physician refused to accept this. We pleaded with the MD to order DNR, but he refused (this was before it became federally mandated that we discuss advanced directives with every patient). The patient arrested and we coded the patient to no avail. I was so angry afterwards, and decided then and there that when I had the opportunity, I would move into hospice nursing.

Jstonesue · Apr 14, 2016

Thank you all for your story Zelda and input from others.

This was the situation for my dear Uncle, age 77, PK diagnosis 11 yrs ago. Moved to Assis. Lvg Nov 2015, got aspirated pnuemonia Feb 9, 2016. Spent 4 weeks at one hospital, got better/worse, intubated/better then to rehab for less than 24 hrs, went right back to 2nd hospital, one week later and 2 antibiotics could not defeat the infection, so Dr. discussed 'End of Life Decisions' with my aunt and his 2 adult children. Of course I am praying for a miracle to get out of this trouble, and wish I would have researched this as I thought his heart would cause the end of life. They removed life support on Fri. He miraculously lived another 8 days and died sunrise Easter Sunday . I feel sick at times with grief, pray a lot. His son did have 2nd thoughts 2 days after life support was removed, wondering if this was the right thing. I did not know what to tell him-called my sister a Pediatrician-she advised him to talk to the Hospice Dr.-he did and said it made him feel a 'little' better- and said whatever we do, would we be back in this same situation in 6 weeks. From what I have been reading/learning about PK cause of death, the aspirated pneumonia is the leading cause, other causes are falls. I believe in Jesus, and His Holy Spirit the Comforter, who did fill my uncle his spirit and peace the last week of his life. Just wished it could have been a miracle healing like in the scriptures.Maybe some day-because I was healed of breast abnormal cells in 2005. Psalms 91-Deut 28 are helpful to learn and connect with Christ.