palliative care

[nona]

Good morning pALS,
I am meeting with the palliative care team at DHMC tomorrow and I wondered if any of you had experience with palliative care in addition to or instead of ALS clinic? I have had a number of friends as well as my PT tell me that I would benefit from palliative care, yet the concept has never been raised by the ALS team at the same hospital. Is ALS too rare and/or specialized to be commonly associated with palliative care?

 

[Nikki J]

Palliative care is certainly appropriate for PALS who need it but are not ready for hospice. Unlike hospice palliative care does not replace your medicare. You can do clinic as needed.

MGH actually now has a neuro palliative care specialist. She did dual fellowships in neurology and palliative care and sees PALS in clinic. This is obviously a different thing though she must arrange home services too. There is research in poor prognosis lung cancer that showed early palliative care improved quality of life so they were theorizing it would be beneficial to PALS too

 

[KimT]

It's such a shame that some parts of the US are so backward and others, like MA, are proactive in health care. I'm not saying everyone should flock to the Northeast but when I went on SSDI I found that my premium for Medicare Supplement was three times (maximum by law) of a 65-year old with the same policy. Had I lived in NY, the premium would have been the same. I now pay over $600 a month for my Medicare supplement and that doesn't cover drugs. In Florida, the Advantage plans don't cover the whole 20% for DME, so I had no choice.

We can't deduct the cost of medical cannabis or CBD oil because it's not Federally regulated but we can deduct, for example, Vitamin D if the doctor says it's medically necessary. Go figure.

Palliative care is a wonderful service, if done right. We just need to make sure our providers understand ALS. I need to bring this up with our local chapter because, the last time I attended, nobody could answer questions about palliative care and my insurance company kept directing me back to Hospice whenever I asked about palliative care.

 

[ReginaS]

We had palliative care. At first parallel to ALS clinic, but shortly thereafter only palliative care. Seemed a better fit. Now the palliative care physician is our hospice Dr. For us it is a good situation. She knows ALS. Makes us feel comfortable as hospice nurse was wondering about drugs that would not be a good combination w. ALS.

 

[lgelb]

A clarification: the hospice (not palliative care, but "regular hospice") gets paid a monthly rate to care for anything related to ALS (why we recommend that you get equipment needed before signing on, as that rate doesn't support capital expenditures).

But other medical conditions or needs that hospice staff don't relate to, such as meds for high blood pressure or glucometer lancets, are still covered by whatever Medicare plan(s) you had to start with.

 

[nona]

We had palliative care. At first parallel to ALS clinic, but shortly thereafter only palliative care. Seemed a better fit. Now the palliative care physician is our hospice Dr. For us it is a good situation. She knows ALS. Makes us feel comfortable as hospice nurse was wondering about drugs that would not be a good combination w. ALS.

Regina, if you can, in what way was it a better fit?

 

[ReginaS]

My pALS had a really good neurologist in the ALS clinic and the neurologist got very sick - so we had to see someone else who is probably good too - but it was not the same. We also had the impression that the clinic could not do much for us any longer as pALS was already in the wheelchair, mostly on liquid nutrition, losing his voice, did not want a feeding tube, and often we figured things out by ourselves before going to clinic. After reading up on clinical trials that he was offered to participate he declined because he did not want to compromise the quality of life during his remaining time w. me and his friends.

The last couple of visits we saw everyone from the whole team, but besides finding out that the breathing had gotten a bit worse there were no insights and we had to answer a lot of questions and already knew that more muscle was lost. We met with the nicest people but it still was more than 1/2 a day that we could have spent at home or w. friends at home - and we are locals, i.e. do not have a long drive... afterwards both of us were always really worn out.

Palliative care: for us, the whole tone is different - for example - we could comfortably and freely talk about dying and end of life. The Dr. is great. She most patiently answered all the questions that we had - we both walked out of there thinking finally (!!!) someone answered our questions in the way we found satisfying. In detail. As much as we wanted to hear. I started wondering if the neurologist and pulmonologist from the ALS clinic did their best answering our questions but did not know. Maybe it's not taught in Medschool. We also were told many times to have a positive attitude which we do have, and we also have certain questions for the time we were in clinic.

The palliative care physician also has excellent skills simply talking to my pALS (and not to me) - however long it will take him to type w. his eyes. She is the physician in palliative care who has experience w. ALS - so now hospice works with her and for example last weekend pALS had a mucus plug and they were close to prescribing medications that were not go good for ALS (cannot remember names) and she is teaching them not to do that. Telling them it's different w ALS so all is good and we are in good hands... our hospice people are great too. Gave us all the machines we needed. Nurse comes by twice a week.

I love this Ted talk about palliative care. Google: "blackhall palliative care ted talk" - it's more on cancer but the points she makes are valid.

 

[ReginaS]

I just read Laurie's post and wanted to clarify: we did exactly what Laurie recommends - first we got our equipment through prescriptions from ALS clinic. Usually by communicating w. resp. therapist and she did the rest. When pALS wanted to go on hospice the hospice intake nurse was great this time: she made sure hospice would get the equipment for us. We could not keep the machines we used but hospice organized the replacements. Not all hospice services do that. After it was clear that hospice would provide the equipment we signed the contract.