Palliative care

Has anyone ever used a palliative care nurse? I'm wondering what they could do that all the doctors at the clinic can't. Thanks

they will come to your house to provide assistance. When the clinic trips become too much, this will provide you with some relief, and they can take care of ordering necessary items for you. This is my understanding, as we checked into it.

Palliataive care is what you should be receiving all along. Palliative care is the treatment for pain, anxiety, shortness of breath, nausea, depression, etc. It's not "curative" medicine.

A palliative care nurse is a good deal. She'll have her own meds supply and a doctor on call so she can give you the meds you need to give you a better quality of life.

Palliative care is so much more appropriate and these nurses may not fully understand ALS in all its aspects but are going to understand how to assist you, in the home, far more fully than a hospital will.

Your clinic and doctor there will work well with a palliative team. They are for so much more than the final end stage, and in fact building a relationship with them now will make working with them at the end stage so much easier!

Mom has a palliative care nurse practitioner that comes once a month. They are very adept at end of life comfort care. As for them not understanding ALS, I think that would be most healthcare professionals....including clinic doctors.

I've been on hospice for the last two weeks which is palliative care. They're great. Drop by once a week. Take care of the pain pills and anxiety pills I use, hydrococode and Ativan. The clinic prefers hospice to handle these med since hospice is exempt from the onerous triplicate requirements. Alex

Here where I live the palliative community team were amazing.

They wanted to know how we wanted things to happen then work with us to reach that.

They would phone me every Monday morning and ask if I wanted them to come this week, how were things etc. If all was good they didn't come and would phone me the next week. If we needed anything or had concerns they would send a nurse in. We only saw 2 different nurses the whole 6 or more months we were with them, so had lots of continuity.

So good to know you could have someone come to our home for many things. We still went in to a GP but as you know there are lots of little things it settles a mind to have checked, like problems with the stoma or the bed sore that kept trying to take hold.

Some palliative care nurses can be quite experienced with ALS.

Through CCAC (Community Care Access Centre – in-home healthcare paid for by the Ontario government/health card) I receive a brief nurse visit every other week. Mostly she just checks vitals and asks me how I’m doing, charting my condition. The nurse I’ve had for the past few months seems to specialize in palliative care cases (my previous nurses were not experienced with ALS, although they were also very nice). She tells me that she is currently seeing eight to different ALS patients, as well as others with different health issues. She’s an older nurse, very experienced, but also quite perky and chatty. I think she’s developed a reputation for looking after palliative care and ALS patients, and as such many are assigned to her. She’s familiar with common symptoms, ALS progression, and common medications. She’s also seen the various equipment and devices that ALS patients use in their daily life, and can be helpful in suggesting or recommending things. Recently she’s told me that it’s possible to get an in-home doctor to visit if I require a prescription and am unable to visit my family doctor for ALS doctor.

An in-home palliative care nurse can be very useful, as in addition to your ALS symptoms they will also take note of your overall health, mobility, mental health, caregivers, diet, and so on. They’ll ask about your day-to-day activities, whether you are getting out and able to interact with other people. Things that your doctor may not be monitoring, but are important to your physical and mental well-being.

we don't have any palliative care in our county. even hospice does not offer it. we don't have any choice in hospice providers either. I think it would be a great thing though!

Barbie,
I think we have a terminology issue in part-- some hospitals/hospices lump "palliative" services in w/ hospice (for the 6 mos or less crowd, ostensibly, due to Medicare though that is less strict now) and others, esp. med schools and larger hospices use that as more of a transitional stage into hospice and/or for pain mgt. I suspect what you might need is available under some term or the other. If your husband could benefit from any skilled nursing, OT or PT hours week after week, there is a path to reimbursement for home health. At the very least, he can get an eval for palliative care-- that is certainly reimbursable.

Also, I'm confused by your statement about only one hospice serving Orange County -- on the FL hospice assoc. site, I see four? Since hospice is under traditional Medicare, even if you're in a Medicare MCO, you should have access to every Medicare-certified hospice.

Does anyone know what type of comfort care can be provided? If a person takes xanax for anxiety but it's still not helping, is the next step morphine/Hospice or is there an "in-between" stage. I'm not really sure what the palliative person provides to increase comfort/what that means and I think we're at the point where we need it. TIA!

I believe palliative care can include morphine-atsugi can answer that as he has had experience (unfortunately).
Morphine is generally reserved for the last stages though as it depresses breathing-essentially starting a cycle of air hunger if there are breathing issues that then requires more morphine to alleviate until... well you get the idea.
Some physicians use this to essentially allow one to die when it is time without fear or pain. Its called the law of double effect-this doctrine says that if doing something morally good has a morally bad side-effect it's ethically OK to do it providing the bad side-effect wasn't intended. This is true even if you foresaw that the bad effect would probably happen.
Everyone knows what will happen in the end but in most states where right to lifers rule politically this is the only way that the physician can legally help one out of their misery.

Both the palliative care team and the hospice people used morphine, but in different doses for different effects.

A small dose of morphine relaxed the lungs, thus making breathing easier. Did not affect the patient's consciousness.

Larger doses of morphine were used to relax the whole patient, relieving them of the anxiety of air hunger. Put them into lala land.

Laurie I don't live in Orange County...live in a smaller rural county just outside Orange. When My husband first got on Hospice several years ago, I asked about palliative care because it was listed in their brochure. they informed me that they had dropped it because of Medicare rules. that was all I was told. They said it was for people before they needed full hospice care. Husband was taken off hospice after 11 months because he was not progressing fast enough. we have a CNA now because the 3 hours a week that we got from hospice was not enough anyway. I can see a need for hospice down the road with pain and meds at the end, but for now what we have works best for us. good thing is I have a new doctor for him that makes house calls so that makes me happy!

Barbie....that is awesome a doctor that makes house calls, I did not think that happened anywhere
anymore.