Hospice

[AnxiousWaiting]

I had posted earlier about denial among family members about my PALS ( 79 year old woman diagnosed in 2013 with ALS). I took her to the clinic yesterday. Her FVC is 36. She has decent strength in her hands and forearms; voice is strong; swallowing is worse. The neurologist recommended hospice care.

I had not even considered hospice for my mother yet! What does it entail for ALS patients? Can we still keep my mother's live in assistant? We like our live in assistant, who is kind hearted and manages household affairs and meals extremely well. However, she is not a trained medical professional and really pushes my mother with things like eating and using her hands -- the focus is on independence and miraculous recovery of strength rather than comfort. Would hospice provide oversight? How about therapy for pALS and cals?

Is hospice somehow different for ALS patients than for cancer patients? My mother was very alarmed. I have focused with her on the advantage of not having to go to the clinic anymore and that we can renew the prescription after 6 months .... any suggestions on how to keep her spirits up?

I must say that I'm at wits end with this. My siblings and I, about two years ago, got my mother's situation stabilized in terms of care. We had attendants and an agency; friends coming over all the time; cooking sorted out; PT coming home. Tough love seemed relatively harmless and was keeping my mother's spirits up. Things were sort of on autopilot. My main focus was on visiting frequently with her grandchildren. But, in the last six months or more, denial/tough love in the family has made things difficult. My siblings and I are not on the same page. Much of what I do is identified as not enough and furthering my mother's "learned helplessness." What's more, I am having to get more engaged in the day to day. For example, pushing for a switch to a Hoyer Lift is a challenge. Everything I recommend is met with "it's okay, it's okay -- see, she can do it." Except people don't see the overall fatigue it causes the PALS.

Anyway, if you guys have links to threads inhospice, would appreciate it. I feel overwhelmed. The added layer of having to filter information because of family denial or family criticism takes up so much energy!!!

Thx

 

[Manhattanite]

Hi, do a search for "Myths about hospice care" for a very useful thread.

I became very alarmed and insulted when my PALS' therapist recommended hospice but I was so misinformed about what hospice entails. I couldn't have been more wrong.

 

[lgelb]

Honestly, with the level of denial coupled with your own uninformed existing staff as you described in your other thread, I can't see hospice as a good idea right now, and as we've noted in any other threads, there's no magic FVC number for it.

Hospice is not going to spend extra time overseeing or educating your existing assistants, esp. when their understanding of the situation is so...out there.

Neuros can suggest, but families are "on the ground" and should coordinate the timing, if any. As you will also read, some of us did not have hospice and did fine.

I would work on the denial first so you can be informed and enter the end of life more as a family, if that's possible. Being closer to the same page will bring you all comfort later, not to mention making your mom's passing more peaceful. If you can come to consensus about the nature of your mom's disease, the hospice decision or any other will have more context.

If I thought bringing in another agency would overcome the denial and dysfunction in a snap, that'd be one thing, but a new set of strangers with their own protocols and policies, expecting everyone to be on board with the proposition that your mom has a near-term terminal illness, doesn't seem like that.

 

[KimT]

I would work on the people who have their heads up their butts in a state of denial, especially the hired help. They need to be more aware of their function and that is to assist your mother in her daily needs. Once they are convinced and the rest of the family understands, Hospice would make more sense. As a PALS, I really feel terrible for your mother.

 

[AnxiousWaiting]

On the matter of attendant's denial of the diagnosis and denial in the family, I have found it to be insurmountable. No amount of tests, reasoning or conversations with doctors can convince people of things they don't want to believe. Either the medical system is corrupt or the illness is just aging or it's possibly a short term (meaning a few years) type thing that will go away with the correct herbal medication. They have their quacks to support their views.

It all seems like madness, right? I have never had a successful argument with these folks.

Why not fire the attendant? She loves my mother, does a great job cleaning the house and providing good food, gives quality sponge baths, is quick with the bed pan and takes her for walks. Often, my mother likes the fact that the attendant pushes her to do more PT or says she should try to hold that cup up just a little longer. It gives her windows of hope from time to time. When I go alone for walks with my mother (meaning pushing her wheelchair up and down the street) she says she wouldn't dream of firing the attendant. And, truth be told, other attendants who have more training and accept the diagnosis have been much more cold and do the bare minimum. They lounge and rest when my mother is taking her afternoon nap instead of doing her laundry or cleaning her room; won't do a thing for my elderly father who is in good health but needs help with daily matters.

I was hoping -- and now I think I'm wrong -- that some consistent oversight from hospice folks will encourage the attendant to at least make better judgments when helping my mother. If OTs and PTs and nurses are coming and going, then the attendant may be more appropriate.

Right now, if I go in and say something like "help her with the cup any time she asks for help" or "don't push her to cut her food up on her own if her hands are tired," she will carry on and cite family members who say that my mother needs to be independent to the extent of her capabilities. She will point out that she catches my mother successfully doing these things, sometimes, when my mother doesn't think that the attendant is watching.

I'm at wits end. I come from a family of very driven, successful people who believe that a person should push, push, push and die trying. What's the point of someone in their 70's conserving energy to extend one's life in a passive state for one or two years? That is the argument I often here.

If you guys have the stomach to see Osage County, that's my family . . . .

 

[pdcraig]

Hi Felix,

My apologies, I thought your mother was newly diagnosed. The level of denial you're experiencing is something else. Unfortunately, I can't think of anything to help with that. People will believe what they want. Holding on to it for more than 3 years and watching your mother's decline is a bit baffling.

I'd have to agree with what other people have said, bringing in another agency isn't going to help unless you use them to completely replace the existing staff which doesn't seem likely.

A few things to point out from my own experience.

The attendant who you mother loves, I believe you said she had no medical training. She sounds more like a house keeper than personal support worker, PSW. She is doing far more than any of the agency staff who cared for my PALS did when he was still at home with me. There were very strict guidelines attached to all the PSW's what they would and wouldn't do. All very upfront and he had a detailed care plan outlining their duties and responsibilities. That care plan was developed by the OT and PT who assessed my PALS and his capabilities in home and at clinic. It was revised as he progressed. If your clinic OT has requested transfers by Hoyer, your PSW's are obliged to comply or they are liable for any injury done to your mother by not following the care plan. Your mother doesn't have a choice other than refusing their assistance completely. When my PALS went into LTC he was assessed and put on a 2 person transfer via hoyer from day 1. He wanted to do stand and pivot transfers and they outright refused saying it wasn't safe for him or the attendants. No ifs, ands or buts.

"See she can do it", typical response from someone who doesn't understand the disease. I had the same problem getting that across to people. Just because he did it even an hour ago doesn't mean he can do it now. I heard, "he's not even trying" quite a lot at first. People can't seem to wrap their brain around the fact that the disease doesn't follow a static pattern. It's all over the place, day by day. If the attendant doesn't believe the diagnosis there is no reason for her to try and understand how the disease is affecting your mother. The bizarre thing is using that to justify why the diagnosis is incorrect when she is in fact displaying classic ALS symptoms.

"Learned helplessness" is a little harsh. Your mom has already broken her leg being pushed to go beyond her capabilities. What else has to happen?

As to the tough love, I get that it gives your mother comfort. When my PALS went into LTC, the PT staff had him doing strengthening exercises on his legs. Completely the wrong thing to be doing, but he liked it so I didn't have them stop. He refused to see those exercises as the cause of his increased fatigue later in the day. You pick your battles. Did it speed his progression? Maybe? Did it make him feel better emotionally? Definitely.

What's the point of someone in their 70's conserving energy to extend one's life in a passive state for one or two years? Again, a bit harsh but ultimately, your mother's decision on how she wants to spend the rest of her life. Myself, I'd argue why waste the energy she has on the mundane day to day things like cutting her food or holding a cup a bit longer when she can have assistance. Save it for things that bring her joy, whatever that may be. It's the same argument, quantity versus quality but different emphasis.

Sorry for replying to both your threads in this one. I hope you and your siblings can reach some sort of understanding so there can be a more coordinated approach to your mother's care.

BTW, I've seen Osage County, the comparison made me smile. I see some of my PALS family in that movie.

Paul

 

[Dave K]

Her FVC is 36.

FVC doesn't predict life expectency. A better measure of a PALS trajectory is the ALS Functional Rating Scale (ALSFRS-R), which is a validated rating instrument for monitoring the progression of disability in PALS. The clinic charts this at every visit (by asking a lot of questions like "how many pillows do you use?"), and this, I would guess, is the most likely basis for the neurologist's hospice recommendation (but you should ask him/her). Incidentally, the trajectory is always downward, so it's scary for the patient to see the chart, but it gives the doctor a basis for prognosing how much time is "likely" left.

What does [hospice] entail for ALS patients?

All hospice care is palliative (i.e., designed for comfort) in nature. Every hospice patient is entitled to have needs assessed on an individual basis. It won't hurt you to call a few hospices and ask them what they have done for other ALS patients. They can answer this question better than we can for you.

Can we still keep my mother's live in assistant?

Yes. In fact, you will want the assistant to help train the hospice nurses and aides about your mother's individual needs.

she is not a trained medical professional

She's trained for your mom's specific needs, and that's what is important. If your mom's needs start becoming more "medical" in nature (like operating respiratory equipment), the assistant and family members will likely be provided some training from the hospice. If the "medical" parts of the job start becoming too much for the assistant, that would be the time to talk to the hospice about working nurses (LVNs) into the rotation. It's impossible for us to predict how much of the job will become "medical" or how well the assistant will adapt to changes that may be coming. The hospice should be continually re-assessing your mom's needs and involving the family in these decisions as the condition progresses.

the focus is on independence and miraculous recovery of strength rather than comfort.

There will be no recovery of strength, and the wrong exercises could accelerate weakness. If your mom and the people caring for her don't get this, you could ask the clinic to intervene.

Would hospice provide oversight?

Yes, to a degree. You need to ask each hospice how they might address the issue of training the assistant, as well as being trained BY her.

How about therapy for pALS and cals?

Every hospice provides counseling for the patient and family members.

Is hospice somehow different for ALS patients than for cancer patients?

Each patient is entitled to an individual plan of care. In practice, however, many hospices provide the same care plan to every patient, regardless of the condition. You need to talk to each hospice about this and judge whether they are more like McDonalds or Burger King ("Special orders don't upset us").

My mother was very alarmed. I have focused with her on the advantage of not having to go to the clinic anymore and that we can renew the prescription after 6 months .... any suggestions on how to keep her spirits up?

Our ALSA support group helped a lot with this.

My siblings and I are not on the same page.

You should all talk to the hospices together, if you can, so everyone's questions can be answered.

Everything I recommend is met with "it's okay, it's okay -- see, she can do it." Except people don't see the overall fatigue it causes the PALS.

Your mom is the boss. If she values independence over conserving energy, that's a reasonable choice. If she's complaining about fatigue, that's the time to say stop pushing so hard.

 

[lgelb]

Dave, the FRS is "validated" across a long-ago, far-away data set. Let's not pretend that it's a prognostic marker. There are floor effects, it's a categorical scale for a linear disease, most pts stop going to clinic. How many PALS do you know who even knew their score 6 months before death? The researchers don't, either.

The FRS is still collected and used in trials because it's the primary endpoint regulators want to hear about. That's it, folks. As we have seen many times, much better markers for "how long" are things like nutritional status/BMI, hydration, fall risk, aspiration risk, interest in activities and of course, respiratory impairment, in the colloquial sense. If someone isn't breathing comfortably, isn't using BiPAP enough to say, get a restful night's sleep for whatever reason and/or BiPAP is no longer suppressing air hunger, a long life probably isn't in the cards.

That said, there is nothing wrong with someone's posting FVC or anything else they want to, because they want to know what the information means.

 

[lgelb]

Medscape republished an article this week about hospice that, though about a cancer patient (whose brother happens to be a gerontologist), makes points that I think some of us try to make here. The title is Who Knew? Hospice Is a Business. What That Means for All of Us.

So, I've attached it.

Best,
Laurie