Myths about hospice care

[scaredwifetx]

Steve is not in any pain either. His doctor felt that at this point...he would be better served by hospice. He doesn't have to go to clinic any longer, does not see his neuro and all cate is handled by the agency. I still have full control and so does Steve. Hospice has just made his care easier for us. His comfort meds, his anxiety meds, feeding tube supplies, Trilogy, cough assist and transfer equipment is now being handled by them. We no longer have co-pays. He also had his first massage therapy today and was brought another machine to aide in suction.

I don't know that hospice is the answer for everyone but as a family we have decided that the benefits are better than we were recieving from repeated calls, emails and trips to his neuro. The convenience has made it easier for us to spend less time keeping up with the changes. We are all less stressed and can spend time with each other. We also know we can get out at any time but see no reason for it. Steve has the equipment je needs in place.

We dont think of hospice as end of life care and I was very clear with the agency.

 

[scaredwifetx]

You are correct Laurie and at no point have I stated that its the same experience across the board. I have seen to many posts where hospice did not work.

I am basically replying to this thread with the experience we are having. I also understand there could be issues in the future. I can guarantee that they will be addressed if so. I also firmly believe that I am not handing Steves care over. Mike and I are still taking care of Steve and will continue to do so. Our opinion is that the extra attention is good as long as Steves wishes are always honored You can bet that I will always make sure they are. I don't feel one bit guilty or feel like his care is not in our hands. I also think that the agency knows where we stand.

Everyone is different just like the many differences in the medical community. Just giving our experience for anyone who is considering hospice.

 

[soonerwife]

Deb, I am thrilled that you have found such a wonderful hospice. I have dealt with two different ones in my life and they were both wonderful.

 

[scaredwifetx]

Thanks Soonerwife. I hope all is well.

 

[Bexlil]

Here in Nevada, I called hospice when I realized my husband was reaching a point where he needed more care than I could give, even with my being on FML. The next day a nurse came out to evaluate him, and she sent her recommendation to his ALS doctor. Less than a week later, he was all set up. He was approved, and Medicare covers the cost. Yesterday I received all of his medication and today all of his equipment he would need. Very quick, thank goodness.

 

[scaredwifetx]

I am glad you were able to get some extra care. I hope it continues to your expectations.

 

[4tloml]

Deb and Bexlil, I appreciate hearing your experience and find it encouraging. As Laurie has said, not everyone has the same experience. Knowing what is possible, however, encourages pursuit of it. I suspect that every situation depends on the interface of hospice and patient--that choosing the right hospice for our PALS's needs is primary, providing that exists in our location. If having to settle for less than ideal, it's good to know the guidelines so we can "nudge" the hospice along toward more optimal care. ALS is rare--we all become educators as we advocate. Thank you, Dave, for all the info so we can do that more readily. Unfortunately, this "hospice conversation" is becoming more relevant for our family by the day.

 

[lgelb]

Deb, I'm sorry -- I wasn't speaking to you directly, but to the world, when I said it is "unwise to generalize." That is just by way of saying, choose what you want, negotiate for what you need and you have rights to go elsewhere or not use hospice at all.

Best,
Laurie

 

[scaredwifetx]

Laurie, no need to apologize. I didn't take anything you said personally. I know that one of the most important things to do, is not generalize with this disease. There are to many variables with hospice, doctors and care givers. Exactly why, I wanted to share our experience with hospice.

 

[Dave K]

What more is hospice going to offer?

The only way to really know is to call a hospice and ask them. Every family has individual needs, and it is the hospice's job to look at everyone individually. If your PALS doesn't need much, then hospice will stay out of your way and won't do much, but they will have a whole home care team ready right away if it is ever needed. And it shouldn't cost you anything. Also, hospice provides some services to the patient's family, not just to the patient. You just have to ask them.

Electing hospice is not "giving up." The whole focus is on optimizing the patient's quality of life. For PALS, the hospice benefit is like the home health benefit on steroids. There are three things I think most PALS benefit the most from by getting them sooner rather than later: a power chair, a BIPAP, and hospice.

 

[affected]

Dave I think there are four as there is also the PEG.

Great thread. In Australia we advocate that PALS register with palliative care early, even though our system here is totally different, end of life is only one part, comfort care for quality of life is definitely the primary function they are there for.

 

[sunandsea]

I'm curious - is hospice something that is initiated by the patient or the doctor? I'm sorry if this is a silly question. I often think I ask silly questions that I should know the answer to and I may regret writing this tomorrow morning. But right now, I just want to know. Like so many others, I'm really tired, and we're not getting any financial help for care. I wonder, reading this thread, if I should be asking about hospice - if it would perhaps provide some help to us. It's never been mentioned in clinic. Is it something they normally initiate or does the patient? I think I've hesitated because I was afraid it meant we were further along the path of progression than I wanted to believe but I realize having hospice doesn't determine how far you are on that path. I can ask at our next visit but that isn't until next month. I think my husband's increasing weakness, difficulties with memory and cognitive functioning, and now difficulties with swallowing and eating mean we are entering a new level of need. Or maybe I'm just tired.

 

[lgelb]

A doc writes it. Often you will need to ask if you are interested, depending on the proactiveness of the clinic, to get an order written. Interview each agency in your network/area to understand the plan of care they envision for your husband. You can choose one or punt till later/never.

He will also have to have his own DME already when he goes in (e.g. wheelchair), or be prepared to come out and back into hospice, for reimbursement, since hospice is for "terminal conditions."

 

[Dave K]

Virginia has some pretty favorable hospice rules, including expressly requiring hospices to provide respiratory therapy and LVN services--both very important for PALS. In our case, the "hospice discussion" was made easier by having seen a presentation about hospice given at our ALSA support group meeting. It was emphasized that hospice is "not a giving up." Hopefully your clinic can also present the information in a positive light for your PALS so it's not so tough to talk about. Laurie is right about getting DME. Although hospices are required to provide all necessary DME for palliating the PALS's symptoms (expressly including even an iron lung, if you can imagine it), in reality most hospices are not organized for the provision of DME and expect their patients to have it in place already. But the bottom line is hospice, like DME, works best if it isn't unnecessarily delayed.

 

[Manhattanite]

We met with our neuro earlier this week. He told us that hospice does not provide a home aide. Is that usually the case? From what I have read here it almost sounds like it is something that should be covered even if it is a few hours a week? In any event, we are meeting with the hospice nurse this weekend to see what they have to offer. The person from the agency that I spoke to on the phone seemed to be questioning why we were requesting hospice if my partner is not in pain...