8 liters per minute of oxygen for ALS hospice care

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SolarDust

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Oct 27, 2015
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8
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Lost a loved one
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US
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California
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San Francisco
Anybody here ever heard of an ALS patient receiving 8 liters of oxygen in combination with Bipap but no ABG testing to properly titrate? I am doing some investigation since I believe this hospice had no idea what they were doing and my mother died prematurely due to C02 buildup leading to respiratory distress.
 
Hi Solar and welcome. I'm so sorry about the death of your mother.

Maybe you could tell us a little bit more about your mum's diagnosis, how long ago, her onset and progression?

How long was she on hospice and in end stage?

Were you involved with your mum's care too?


Tillie
 
Her FVC was below 20%, and had gotten worse in the last month or so. The report I read from the doctor from her most recent ALS clinic visit said nothing about her death being imminent. I was not the main caregiver, but I was kept updated several days a week regarding her condition and tried to help as much as I could long distance. Her family and friends as well as I were all flying out for Thanksgiving weekend to see her for what would probably be the last time for most of them. This obviously will not happen now.

The hospice people had not even fully set up yet, but booted the previous respiratory tech (that worked with my mom the last few years) and replaced him with their own in house respiratory technician. She died the day after my parents signed up for hospice. She wasn't even given her hospital bed to sleep on. No low dose morphine was given to quell air hunger that she had and they just jacked up the oxygen. This is not proper ALS hospice care from what I have researched and I would never want anyone else to experience this. The oxygen was already high (5 liters) before the hospice arrived, and they added 3 more iiters per minute. They marketed themselves as being very experienced with ALS patients, but after my father questioned them after she died about how many ALS patients the hospice worked with they declined to give a number. This is just the tip of the iceberg folks. Unfortunately she lived in a very backward part of the United States that has subpar healthcare and not the brightest doctors.
 
Did your mum have any written express wishes on how she wanted the end stage to be?

It must be very distressing for you.
 
I do know she did not want a tracheostomy, but I also know that she had a very strong will to live. She knew and was aware that everyone was visiting her very soon. Yes, her breathing had declined quite significantly in the last month, but it wasn't at crisis point where she was having traumatic gasps for air or anything. She was suffering like every ALS patient, but not tremendously so. This is what my father relayed to me. The main issue was that she had to have her Bipap mask on pretty much 24/7 at that point, but she was reasonably fine as long as the mask was kept on.

If she had stated to that enough was enough and that she wanted out, I would respect that. This was not the case. They hastened her death through sheer stupidity and ignorance of ALS care. If she had gotten the proper protocol, and died then I could deal with that.

One tidbit I will throw your way is that she went 9 years with progressively worsening ALS before being officially diagnosed in a hospital that knew what they were doing i.e. John Hopkins. 9 years with ALS and when her lungs finally started weakening the clueless doctors diagnosed her with emphysema (despite her being a non-smoker he whole life) and couldn't put two and two together that she had progressive muscular atrophy plus ALS. She lived two more years after the John Hopkins diagnosis and died last week. I think she had at least another 3-6 months in her if she would have gotten proper hospice care.
 
I'm saddened and shocked to read of such incompetence at hospice. This sounds like an exceptional situation not likely to be repeated, thankfully.

As general advice to everybody, a well-thought-out WRITTEN advanced directive, placed in the patient's chart and discussed with the hospice nurses, might prevent tragedies like this.

The statement that she was "suffering like every ALS patient" is too broad. Certainly we're all sad and distressed to see our end approach, but I read many stories about a PALS end-of-life that I would NOT describe as "suffering." My own wife's EOL experience was relatively anxiety-free.

SolarDust, you have every right to be upset about the incompetence you saw.
 
I'm so very sorry for your loss. I have you in my prayers.
Michellesews
 
I am again so sorry.

I just have to say that it's very hard for us to really have much of an opinion on what happened as none of us were there, not even you.

I hope you can find a way to acceptance soon and find some peace as you all grieve.
If you pursue this legally I wish you all the best as it will be tough and would just suggest you really make sure it is something you need to do.

Playing the 'what if' game is always dangerous. PALS take very sudden turns for the worse and die, PALS seem to be fine and suddenly die in their sleep or in the middle of an activity. Many CALS say - no one told me he/she was about to die. The shock can produce a lot of anger.

I'm saying I don't know what happened. I do know ALS is terminal, always, and can take very sudden turns and your mum's breathing was 20%. That is a PALS that can pass at any time.

As Mike says - all that pre-planning is just so important. It includes for you guys in the states, checking out hospice choices very carefully.

I am very sorry for your loss.
 
Dust,
I'm sorry for your loss but like others, I don't believe you can legally prove out the extent to which your mom died "prematurely." However, it's a valuable example of something we talk about here, that hospice, if any, should be a conscious choice, with interviews and perhaps references behind it, that they can/do want to have their own staff/procedures, that there has to be oversight because ALS is so rare and care should be individualized to the patient, not the disease. And P/CALS have the right to dismiss any/all staff from the home, at any time, for any reason. I'm not second-guessing what you did or didn't do, Dust.

I wish you peace in coming to terms with your loss, and encourage you to share your concern with your mom's clinic, the local MDA/ALSA, and so on. You might also write a letter to the hospice CEO asking for an investigation and report back to you, with a copy to all those same groups. While not the same as legal action, it will put management on notice and help protect future patients. If your mom was on Medicare and/or Medicaid, I would copy the local ombudsman and QIO (quality improvement organization, listed by region on line) as well, and/or the case manager of any private plan.

All the best.

--Laurie
 
Thanks everyone for their thoughts. I don't think ever mentioned that I was thinking about pursuing legal action. I could see how someone could think that was where I was headed. I am still investigating the circumstances, and I am just taking it one step at time.

Basically, I'm not trying to ask anyone for their opinion on the whether or not there was negligence. It would be really helpful to know if there are any subforums here that address hospice care specifically. I really would like to know what the standard of care is with regards to respiratory issue in PALS.

I just wanted to know if anyone here had a loved on in or outside of hospice exposed to 5-8 liters of oxygen per minute in conjunction with triology. This would be very helpful. It is my understand that no more than 2 liters of oxygen per minute should be given to PALS, even with BiPAP.

If you could direct me with some CALS who have had or currently have a loved one under hospice care so I could get a better understanding of the standard of care that would be extremely helpful.

Thank you
 
We would like to believe that all caregivers are competent and every hospice would do all the right things, but my experience is different.

We had hospice in my house. Toward the end when my PALS was in "Crisis Care," they gave us a personal nurse in our house 24/7. I discovered that none of them knew anything about ALS, and none of them had dealt with a totally paralyzed patient before. One nurse told me she had been in admin all her career, and really wasn't comfortable with patient care.

So I trained everyone of them at the beginning of their shift, and told them to call me under certain circumstances. This way, I was able to closely supervise everything personally, and I was also able to get a few hours sleep during every shift.

Under these circumstances, I was very happy with the help, and my PALS had the best passing possible.
 
My mom is currently under in home hospice care. Her Neuro made the suggestion to make the transition when her fvc measured at 18% in her clinic eval in Sept. I interviewed two hospice providers. Liked one but they had little to no ALS experience. Chose the company we have based on the fact that they receive many of the ALS patients from mom's clinic AND one of the head nurses spent many years working in the same ALS clinic I mentioned before moving to the hospice side.

This nurse explained to us that administering oxygen to an ALS patient does have a strict protocol and for this reason it would be dangerous to call 911 and have someone wrongly administer oxygen.

The sad reality is this nurse is a supervisory nurse and is not our weekly nurse. Our weekly nurse does not have ALS experience but is otherwise very qualified. I reach out to the supervisory nurse as needed and the weekly nurse can consult with her as needed.

Again, my mom is not in a facility she is at home. The benefit is she is closely monitored by me and my siblings who do know ALS and her specifics with it. That's pretty hard to replicate anywhere.

I'm very sorry for the passing of your mom and being unsettled by the circumstances of it.
 
Dust,
What you're chasing doesn't exist. When oxygen is being used as a comfort measure, a bridge to death rather than to improved health status, there is no "X liters max" guideline in the literature because the intent is not to lengthen life, so the risks of CO2 retention have become less salient.

Given that continuous O2 in ALS tends to hasten mortality, its use signifies in and of itself that there is no expectation of return to baseline.

There is no hospice subforum here. You may get a few more responses but they are not going to answer an unanswerable question.

As to your comment about O2 with BiPAP vs. O2 w/ a Trilogy, the effect of the O2 is the same. And being on a Trilogy vs. another BiPAP w/o a trache signifies nothing about health status, only clinic protocols and reimbursement.
 
What is being said is so very important.

If we have a PALS that is doing well but their breathing is deteriorating, we use bipap to assist. If they are on it long term, some RT will suggest adding a small amount of O2 with the inspirations. This is for long term maintenance.

If the PALS is nearing end stage and comfort is the goal, then the amount of O2 is quite irrelevant because there is no goal of bringing them back to some place of long term maintenance.

Laurie says it well. It is why I was asking some questions in my early replies.

Maybe they hastened her death, maybe not. If they did, maybe it was by hours or days. If she was being kept in a comfortable place, is it such a big issue? If the higher O2 gave a good palliative outcome, it may have been the right choice.

The thing is we just can't tell from here. The people who can give some kind of answer to you are those of us past CALS who are here. Most CALS leave the forum after their PALS passes.

My husband never used bipap of any kind. So as he entered end stage I was giving him meds and titrating the doses up with palliative advice. Did I hasten his death by the slowly increasing doses? He was in 'end stage' for 4 days. Would he have lived a week on lower doses? I never ask myself questions like that. I would never have wanted him to last longer in the end stage if he could not have been kept as comfortable as I kept him.

Somewhere there is a trade off with this disease. Somewhere, for me, accepting the terminal nature of the disease, and accepting my total lack of control of what it would do to him, allowed me to apply palliative measures that gave him a good death. I have peace with that.

I truly hope you can find a way to accept the terminal nature of ALS and if your mum passed peacefully, accept that this is a good outcome. What if she had lived until you all came to visit and was in an awful state and you had all sat with her wishing she had passed quickly a week or two earlier? That's where 'what if' becomes a very dangerous game. We don't know that this was the worst outcome for her.

Again, I wish you peace. I've been grieving for 18 months now.


Tillie
 
Laurie,

You do not know all the circumstances, but I do respect that you are a long time member of this forum so I will respond to your comment as reasonably as I can.

I do not care for your term "chasing." I am seeking the truth and finding out why my mother did not receive the proper care she deserved. It would not be right to have this substandard level of care happen to anyone else who has ALS in the future by this same hospice or doctor that gave orders to treat an ALS patient with such high levels of oxygen.

What you are saying about hospice care is completely false. Hospice care is not only for patients for whom death is imminent. It is the decision of the patient as well as the caregiver if the patient is incapacitated to make those decisions. Hospice can be used for supportive care as well ending suffering as quickly and comfortably as possible. My father made it especially clear that Hospice care and the clinic agreed that hospice was to be used more as a supportive measure (extra set of hands assisting the caregiver) than as a comfort measure. Of course if the situation deteriorated to point of suffering then it would be reasonable to implement solely comfort care at the expense of prolonging life. You were not there Lauren; my father was. And she was not suffering to the level of needing comfort care solely.

Ignoring this issue does a disservice to future PALS and CALS who should be treated with the standard of care that PALS deserve in hospice. These hospices get paid by our tax dollars and patients deserve proper care, not subpar care.

Lastly, I do have to say that this comment "Given that continuous O2 in ALS tends to hasten mortality, its use signifies in and of itself that there is no expectation of return to baseline." is a circular reasoning and most people would consider that an insult to their intelligence. I don't think I have to even explain why that comment completely obscures why so much 02 was given in the first place.
 
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