Follow up after acute exaberation

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My mother had a exacerbation in December and was hospitalized for 10 days. When she came home I knew she was dying. It was very apparent. Together with her primary care physician we got her on what we thought was early hospice. She wanted a second opinion so we followed up with her Pulmonologist. He was dismissive. Ordered no tests and told her the gurgling sound she was making was allergies. Sent her home with a prescription with a expensive new inhaler she couldn't afford and told her to use saline spray for her "allergies". He told her she wasn't due for another lung function test until May. Is there not a standard of care for this? Are tests not ordered when someone was recently hospitlalized and the condition re-evualuted to see how far the disease has progressed. My Mom ended up passing away in a hospice home about 4 weeks after that appointment. 

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  • Posted

    I am so sorry for your loss, and for your mother's and your experience with the medical system.

    As an American, this all sounds very familiar. I've had pulmonologists just stare at me when I said that my lungs sounded like an old coffee percolator.

    There also now seem to be differing philosophies about "hospice" care. It used to mean that from entry onwards one received nothing but comfort care and thus no doctor would've attempted any new treatments for your mom. Did they not explain that to your mom and you?

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  • Posted

    I am so very sorry for your loss of your Mother. I wish I could offer more. I am newly diagnosed and just starting this journey. It's been overwhelming. It all came so fast. Nothing anyone can say or do now to change your dear Mothers outcome. It was her time to go home to God. The last thing I hope for you is for you to know you were a good daughter or you would never have posted this. I think the worst part of being the daughter or son to feel guilt. You need not feel this. I did not when I lost both my parents. I was a good loving daughter so I carry no guilt. Hang on to the fond memories. You can't change it. Just know in your heart that you were there. Hope this helps you a little bit.

    Ellen from Canada

     

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  • Posted

    I am so sorry for your loss. My mother passed away February 13, of this year. She was on Hospice care for almost 5 months. Before we started with hospice her pulmonologist never once told us she was not going to make it much longer, in fact every time we went for an appointment he would just give out new medicines for all her new ailments and send her home. She had got to where she could hardly sit up st the doctors office beca she was so weak. It would take me and my sister to get her in for her appointments. We would sit there for a few hours until we was seen. And of course never got any real answers. I felt it was his mission to get all he could until the very end. She also showed signs of chf and whenever it was mentioned to the doctor we was pretty much ignored. To make a long story short she was finally diagnosed with chf. My momma and us decided to go with hospice shortly after she was diagnosed with chf. We had to mention it to him, her pulmonologist about putting her on hospice. I guess he didn't think she was ready for it. Once she was on the right medicines her breathing actually got better on hospice. i guess what I'm trying to say is yes I think some (not all) doctors will milk it till the end without the patient and their families in mind. It's sad but true. And it sounds like y'all were done the same way. It was a long road with my momma and I am so honored I got to do it with her. 

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  • Posted

    From the replies here and talking with other people sadly this seems normal. I talked with our primary care doctor yesterday and he is very up front with me and he was not surprised by what the Pulmonologist had done. I am also dealing with the guilt and questioning that the hospice home pushed her into death sooner than she was ready to go but I have to remind myself how very sick she was. She would not have lasted much longer if that was the case and if she did her quality of life would have been terrible. He was also honest with me about that in that is probably what happened but he reminded me that she was unable to breath anymore and losing her mind. Thank you all for the replies. Its hard to mourn someone and not question everything that happened up until someone's death and if anything could have been done differently. 

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    • Posted

      Sweetie, your mom's pain and sorrows and breathing problems have ended. When the doubts or self-accusations start, please remember that. Remember also that your mother knew she had a wonderful daughter taking care of her.

      Hang onto these things and the knowledge that she raised you to be that good daughter and she lives on in you each and every day.

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