I'm concerned about DH medical care in MC

White Crane

When DH entered MC in January this year he was using a Spireva inhaler to control his COPD. Since then, the MC doctor first changed him to a different inhaler and then discontinued that and started giving him albuterol breathing treatments three to four times a day. DH came down with bronchitis in March and was extremely ill with coughing, chest pain, and fatigue for well over a month. I begged them to give him an antibiotic but they refused. An x-ray showed no pneumonia but he continued coughing night and day for over five weeks. They finally prescribed a cough syrup and Mucinex but that is all. During that time, his weight dropped. In fact, he has lost 20 pounds since entering MC in late January. I think he is finally over the bronchitis but the cough continues and is intense at times. The aides tell me that he is coughing a lot. All the nurse says is that he has COPD and that is to be expected. They continue the breathing treatments every day but he was not coughing like this when he was on Spireva. I haven't been able to connect with the doctor so I am going to talk to the administrator and see if I can arrange a meeting with him to discuss this. I am concerned that he needs better treatment. Any experience or advice will be greatly appreciated.

Brenda

M1

Brenda, I would ask to review what if any inhaler therapy he is receiving. Spiriva is an anticholinergic—these can be given by nebulizer treatment also, in fact you can ask about giving albuterol (a short-acting beta agonist) and ipratropium (a short-acting anticholinergic) together—there's a combination nebulizer solution called DuoNeb. He probably should also be receiving an inhaled corticosteroid. If he is not with it enough to use a multidose inhaler (and he may not be)—steroids can also be given by nebulizer (Pulmicort is a common brand, generic budesonide). Hope that helps.

Depending on what they tell you, I would ask if he can be given inhaled budesonide twice daily and DuoNeb up to four times daily. With steroids, you need to be careful that they help him brush his teeth or drink or eat after using it—steroids that sit in the mouth can cause thrush and irritation.

White Crane

M1, thank you so much for the information! This gives me something to tell the doctor and discuss with him. It’s been so frustrating trying to get him the help he needs.

harshedbuzz

I would talk with the DON about this. The doctor dad saw in the MC saw patients in 6 different small MCFs, so getting a face-to-face meeting wasn't always doable, but he was very responsive over the phone. I found his palliative approach to dad fine given dad's progression, but he did prioritize dad's breathing issues— COPD and mild pulmonary fibrosis. If you aren't happy with his treatment, perhaps seeing an outside specialist would be better— we used medical transport for dad's urologist because the PCP wasn't comfortable treating prostate cancer. It wasn't convenient, but we made it work.

IME, some MCFs are more about the residential/custodial care than higher acuity things like insulin or regimens that are time consuming. It's hard to deliver that kind of care in a situation where 2 aides have 8 people to attend too and might have to choose between an agitated individual, someone with a serious bowel accident, family who wants an update about their LO in addition to getting people to activities, doing well checks, laundry, serving meals and hygiene. At a certain point, family is asked to supplement care with private-hire aides.

HB

ButterflyWings

What is it with Drs changing a protocol that’s been working?

This happened to DH while on respite at MC and in an ER, despite what I told them (and what his medical history shows. No reason! Whatever happened to “if it ain’t broke don’t fix it”?

Then when his breathing and wheezing went (predictably) off the rails, there was no urgency to acknowledge the error and urgently work to ease his symptoms. Having a pulmonologist on our team who can verify what I am seeing and saying, helps.

I am so sorry you and he are dealing with this. M1 mentions several things that have made life better for DH and his lung issues (asthma, not COPD).

You keep breathing. If you aren’t yet emailing your concerns and requests, I would. Phone calls and in person discussions never got me the same results that a paper trail seems to provide.

Mint

i’m not defending the doctor here I’m just telling you what some of my concerns would be if this was my parent. The first thing would be can he follow instructions. Will he do a 10 second breath hold after inhaling off of the inhaler. If he cannot follow instructions, or if he is unable to do the inspiratory hold, then the inhaler will no longer be effective because he won’t be getting the medication. As M1 said, there are other routes to go with similar medications by nebulizer. If he had been able to follow instructions and then became unable to follow instructions, it’s even a possibility that that was even the cause of the symptoms. I would just ask them why they switched them. They may have had a very good reason.

Then I would ask them what medication he is getting for his breathing. Many people find ipratropium in very effective and so he could be missing that if he’s not getting it.

If he has bronchitis, my understanding is the cause is usually viral. They checked him for pneumonia you said, and that supposedly was negative so therefore there may have been no need for an antibiotic, which, personally, if it was my parent, I would’ve agreed with. Antibiotics do have their issues and especially being used if it’s not needed is a bad thing to me. My experience with bronchitis is that a cough can last for quite a while after you get bronchitis.

When you talk to the physician if you don’t feel comfortable with the answers you are receiving is it possible that you can ask for a referral to a pulmonologist just to get his opinion about diagnosis, the medication and if he feels there’s a need for an antibiotic or not. Have you had a pulmonologist previously that you would be more comfortable with since you know them.?

MN Chickadee

I have been on all these inhalers for lung problems. I get into coughing spirals after the common cold that last weeks and causes wheezing that occasionally send me to the ER. Spiriva seems to be one of those "ask 4 doctors about it and you'll get 4 different opinion" ones. I was recently taken off it - my immunologist disagreed with my pulmonologist. She said it may make me FEEL as though my lungs are better but could be masking inflammation. Although in his case you probably aren't worried about long term year after year inflammation. Has he tried and failed the steroid inhalers such as Symbicort and Advair? They are usually the first ones tried and treat inflammation. Albuterol does nothing for my post-viral cough. Spiriva is extremely expensive, I wonder if the doc thought it wasn't doing enough to justify the price? Also, is he able to use an inhaler properly? Does he at least use a spacer? That gives a person more time to inhale the medicine. If he isn't using it right and (and some of these inhalers you need to rinse out your mouth and brush teeth after) it may not make sense to use the $600/month Spiriva. It's kind like long lasting albuterol. I had a blast of albuterol via nebulizer in the ER once and it made me feel super jittery and anxious, racing heart and though it didn't last more than the 15 minutes or whatever it is would still be hard on a PWD. When I get in a bad spiral during cold and flu season like your DH, the only thing that allows my lungs to bounce back is prednisone. 2-3 days at a low dose is usually enough to get rid of the cough without nasty side effects. Longer than a few days and most people get side effects. I don't know if it's well tolerated in people with dementia. In any case, I would definitely insist on seeing the doctor. Is there an online patient portal so you could read the clinical notes as to why the doc may have changed the meds, and/or message the clinic asking for a phone call to discuss it?

Marta

FYI: Spiriva is a single component med.
Mint makes an excellent point about handheld inhalers being less effective in persons (eg: PWD) who have difficulty with coordination of the maneuvers required to use it effectively. Spiriva Respimat is one such example.

White Crane

Thank you all. I appreciate all your input. I haven't tried emailing but that may be something to try to get a response from the doctor or his nurse. He was able to use an inhaler in January but I realize that may have changed. I will be at the facility on Wednesday and will try to get some answers at that time. I don't mind the use of the nebulizer as long as they are using the right medication for his condition.

Mint

Thank you Marta for correction