When is it time for hospice

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JohnHMich

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We are at the point where all lifts use the Hoyer, 90% of food and all the meds are thru the gtube, she can’t operate her chair, write a check, turn pages on a paperback, or hold herself upright. I expect she will lose the ability to speak in weeks.

She has a DNR and doesn’t want a trach.

I feel like we are waiting for the first night time choking, breathing, distress situation to see how we fare.

I feel like at-home hospice doesn’t really change much in that scenario. I am still the person to call 911? And under what circumstances? What can paramedics do for an ALS patient with a DNR? What does at-home hospice do as breathing issues increase? I assume they just come once a week?

I am trying to prepare, but this is uncharted territory…
 

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Really sorry John, it is a very hard position.
These decisions should be covered in her living will - under what circumstances she would would an ambulance, eg if she fell and was injured, as compared to developing pneumonia.
That means you should feel confident about when/if you would call an ambulance at all.

My Chris reached a point where he said - no more hospital. I then honoured that, and even though it was obvious he had pneumonia, I managed that palliatively and his passing was more peaceful than so much of the preceding time.

It might be time to discuss this with your PALS, her doctor and local hospice to see what is going to be the best fit for you all?
 

lgelb

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I hope you know how to adjust the Trilogy should choking occur, but properly adjusted, air hunger should not occur till the end of life. Lmk if you need help.

Just FYI, many PALS have lived years at about the point you describe -- everyone is different. And most at that point do not call ambulances, no. For almost everyone, the ideal death is at home.

You don't have to use hospice unless/until you want to. If you want to, as Tillie says, you can ask the doc for an order and start interviewing agencies.

Hospice, for those who choose it. is to help you keep her comfortable. It is not to intervene in difficult situations per se, because, as you point out, the odds are they won't be there. But many of us have gone the whole way and we adapt. You can, too. No one knows everything, but most CALS end up doing much more, way better than they imagine.
 
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Yes definitely, I would interview all the local hospice choices, once you are clear on your PALS wishes, besides the actual DNR.
That way you can ascertain if there is one that will work with you and your PALS wishes (and I think this is often the case).

I find it hard to give much advice on this as our system here is so different. I spent the last 4 days of Chris's life speaking to a palliative care nurse on the phone twice a day for really close support as I took him through what was obviously end of life.
Even now, things are done differently here with how that hotline works.

But what I do know is that having as much prepared in advance as a CALS is invaluable.
I had equipment here before it was needed, I explored options and strategies before we needed to make choices.
The main benefit was that I avoided some potential crises because I was clear on stuff before it happened.

As Laurie indicates, your PALS could still have quite a bit of time ahead, even at this stage. But I think that knowing how you will transition to the next stage allows you to spend more time 'being' in whatever stage you are currently in.

We were clear on end of life choices, and once Chris indicated he was there, I was ready and we had the relationship with our palliative care team, to just move into that stage.

I hope you can figure from this how to make that more possible in your situation. We are here with you.
 

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Having had no previous experience with hospice, I didn’t realize that they are not all equal. Definitely interview those in your area to find out what they offer (for both your wife and you). There may be benefits even if your wife has time left, and it would be helpful to be enrolled if she does not.
 

Nikki J

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Does she have a communication device? That would seem urgent no matter what your plans and hospice likely
won’t pay for it
 

Mary2

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My PALS is close to the status of your PALS but can still operate the wheel chair and eats dinner and takes pills. He has had several choking episodes. All on throat secretions, none on food. He is on a mucous thinner, has a cough assist and a suction machine. Last week we purchased a quad alarm which he can operate with his head. I think I need a baby monitor to make sure I can hear it in my room. The hospices I know of provide home health aides to help with bathing and nurses to help with medication support. We might want to still treat pneumonia should this happen, and I don't want to get into a dispute with hospice over what they will cover and what they will not. PALS and I aren't ready for hospice. However Hospice at the right point in time, is a wonderful service.
 

JohnHMich

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Thanks all. The Wed clinic covered the Trilogy and cough box settings I can use at our appt. They also wrote an order for a suction device, so I am feeling a lot better about how to deal with choking, coughing, and air hunger. She has started to use the Trilogy on naps, and that is showing an energy benefit. Her co2 is still normal but her FVC and FEV values are dropping a few percent a month. So that’s a concern.
 

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I am the social worker at the ALS Clinic of the MidSouth in Memphis. I am also the widow of an ALS patient. I earned my MSW after my husband's death after a career in Econ/Finance/Accounting. My 1st internship was at a hospice agency (important to me as we did not understand or utilize the benefits offered). As soon as you have all durable medical equipment (and that does include a communication device), that is the time (with your MDs sign off) to go on hospice. If your wife needs anything that is not covered by hospice, she can always go off of hospice and get it in place. There can be up to a 30 day wait to return hospice services. Hospice offers in home care (CNA ~ available to help with hygiene, basis house hold services for her, etc.), weekly visits from a nurse (helps with peace of mind), social work visits, chaplain visits (if you are interested) and the assurance that each of these clinicians are meeting to assess and stay abreast of your wife's condition. Hospice services for an ALS patient can be available for years. The age old idea that hospice is only for the very end of life is not applicable. ALS is a degenerative disease. Continued hospice is predicated on a decline noted by the review board which, unfortunately, is going to happen with ALS. Hospice is fully covered by Medicare and most private insurance companies. Please reach out if you have any questions.
 

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Just a note that hospice is not one-size-fits-all. The range of services will vary according to region, agency and insurance (not only as a matter of policy but the agency's budget knowing the rate their owner has negotiated). The timing will and should vary by PALS' needs, preferences, and other support systems.

Miss, it sounds like you may have interned for a wonderful agency, but you cannot generalize that.

There is no national mandate for what a PALS receives from hospice, and I would very much disagree with any blanket statement about if/when to start it. Many PALS do not necessarily want or need changes in equipment, supplies, policies (which also reflect religious ownership, if applicable, and the medical director's practices), and expertise available to them such as a hospice agency can represent.

Once hospice is in place, Medicare considers the agency to be the primary provider of ALS care and pays the agency a fixed rate per month to do so. That has multiple implications that may affect quality of life. PALS have enough of a deck stacked against them; they deserve maximum choices in health care, the hospice choice being just one of many, not an imperative in any way.

Best,
Laurie
 

JohnHMich

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That was clearer after the discussion with the pulmonologist. We have a living will and advanced directives. I think the main draw for me was some sort of extended respite care. I am not sure how many more times she will be able to sit through an ALS clinic day. This time it was 8-3:30 and she was totally beat between the early start, no nap, limited food/drink. But the other issue is pain management. So far that hasn't been an issue, but I assume skilled nursing has to be involved for any serious pain management. My vision of hospice was the Hallmark channel version. At home hospice seems like a minor subset of that experience. I think we'll probably wait until she is uncomfortable and involve them at that point. If there is a variation in levels of service, interviewing potential hospice organizations earlier seems like a good idea.
 

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I'm glad you have some idea of the next steps now. Those clinic days sound brutal for a PALS and you might find if you have all the equipment needs met etc that you don't need clinic anymore - but only you can figure that one out.

I do advocate for checking all hospice possibilities and knowing in advance what they can offer you specifically.
Some here are really quite against hospice, but they can be fantastic from what I've read here from perspective of others. It is a big power of this place - you get many experiences to draw from and can work out what fits your personal situation.
Hospice is certainly far more than the Hallmark channel (which made me laugh as I have no idea what that is, but I can picture it!)
Pain management at home can be managed by you, don't fear that you can't give high end meds to her yourself.
 

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As Tillie says, pain management and/or air hunger near the end of life in ALS can be conducted at home with a doctor's prescription as always. ALS is not like cancer, for example, where pain comes from pressure on nerves, spread to the bones, and so on.

ALS pain is more around the stiffness and pressure of immobility, which can be prevented in large part through position changes (e.g. tilt/recline in the wheelchair) and padding areas that don't have much natural padding of their own, like the elbow and forearm, along with stabilizing/protecting hips, knees, and heels in bed. Massage and passive range of motion exercise are other ways to lubricate what you can.

At the end of life, there is no reason to measure meds when you focus on your PALS' wishes as the guide. Some hospices buy into that and others don't. Above all, if you opt for hospice, you should have a frank discussion up front as to the extent to which their philosophy overlaps with yours and your PALS, which means first having the discussion with your PALS, of course.
 
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On point Laurie, back around to where I started - get clear on your PALS wishes, put the legals in place for that, then find the help that aligns with those things. All this can take time and effort, so the earlier you know your options, even options for stages, the easier it is to move through changes and keep crises a bit less impactful.
I hope this helps a little, and I wish there was one simple answer, but everywhere is so different and even here where I am, there have been changes in how our palliative care service works since I had their help.
 
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