Jim, thank you for sharing and I'm sad that your mother and all of you had to experience that because of what started as a medical error with the pacemaker being contaminated with MRSA. In my 40 years in this field, I've seen far too many physicians and other providers who can't have informative conversations with patients and families. It leads to a lot of unnecessary suffering as your mother experienced. Many people in healthcare see it as a job and don't have the heart and compassion.
I have been involved in similar conversations with insurance companies. I'll never forget the insurance medical director who said in an appeal conversation that a child "was not on a trajectory to death" and should not be on hospice at that time because he and his parents chose to go to the hospital when his symptoms were not managed at home. The insurance providers refuse to assign case managers to help navigate the complexities of Medicaid pediatric concurrent care benefits working in tandem with private insurance. They deny services to nonhospice providers who simply need an insurance denial to be able to bill Medicaid. Without a case manager, there are roadblocks for both hospice and other providers. This forces the parents to have to forego hospice services to avoid losing services such as ventilators, private duty nursing, aggressive medications, etc. It's inexcusable!
Wow, your mothers story is horrifying. I’m so sorry you all went through that.
My MIL had a stage IV cancer diagnosis that I watched her oncologists continue to throw treatments at when they should have been more open about prognosis.
I feel as though her death would have been more peaceful for her and her family if she had more time in hospice. It was only a few weeks.
How sad and how utterly commonplace this story is, Jim. There are thousands of such stories unfolding at this very moment. Unheard are unseen , these narratives are sequestered behind a veil of trauma and crisis. They are being lived right now by people that have no idea the questions to ask, the demands they can make, and the nature of appeals. The healthcare professionals that act from ignorance and defensiveness are not held accountable, and simply avert their gaze from the tragedies unfolding right in front of them as they strain to maintain some sense of agency and to support their fragile egos in an economic structure that has herded them into inflicting rather than relieving suffering. After 30 years in medicine, I am tired of speaking out in an effort to illuminate this tragedy of a society that has industrialized caring in such a profoundly ineffective way. But I am not done. I am continuing this work...one person at a time. Thank you for sharing this extremely personal and all too familiar story.
Jim, this is a horrifying story well told. Those difficult conversations are hard for the caregivers to deliver, but it’s part of their job. I’m sorry all of you had to go through that. In one similar situation, we encountered a hospice nurse who gave some of the most transparent, informative updates on an older relatives’ prognosis, and even though it wasn’t entirely black-and-white, it was clearly much better than you received. It’s a shame that clearer explanations are rare.
Thanks for sharing, I feel some of your pain, and I’m hoping this discussion helps make things better for others going forward.
Jim, thank you for sharing and I'm sad that your mother and all of you had to experience that because of what started as a medical error with the pacemaker being contaminated with MRSA. In my 40 years in this field, I've seen far too many physicians and other providers who can't have informative conversations with patients and families. It leads to a lot of unnecessary suffering as your mother experienced. Many people in healthcare see it as a job and don't have the heart and compassion.
I have been involved in similar conversations with insurance companies. I'll never forget the insurance medical director who said in an appeal conversation that a child "was not on a trajectory to death" and should not be on hospice at that time because he and his parents chose to go to the hospital when his symptoms were not managed at home. The insurance providers refuse to assign case managers to help navigate the complexities of Medicaid pediatric concurrent care benefits working in tandem with private insurance. They deny services to nonhospice providers who simply need an insurance denial to be able to bill Medicaid. Without a case manager, there are roadblocks for both hospice and other providers. This forces the parents to have to forego hospice services to avoid losing services such as ventilators, private duty nursing, aggressive medications, etc. It's inexcusable!
Wow, your mothers story is horrifying. I’m so sorry you all went through that.
My MIL had a stage IV cancer diagnosis that I watched her oncologists continue to throw treatments at when they should have been more open about prognosis.
I feel as though her death would have been more peaceful for her and her family if she had more time in hospice. It was only a few weeks.
Jim, I'm sorry for all that happened to your mom and to your family. Thank you for your perspective and your courage in sharing.
How sad and how utterly commonplace this story is, Jim. There are thousands of such stories unfolding at this very moment. Unheard are unseen , these narratives are sequestered behind a veil of trauma and crisis. They are being lived right now by people that have no idea the questions to ask, the demands they can make, and the nature of appeals. The healthcare professionals that act from ignorance and defensiveness are not held accountable, and simply avert their gaze from the tragedies unfolding right in front of them as they strain to maintain some sense of agency and to support their fragile egos in an economic structure that has herded them into inflicting rather than relieving suffering. After 30 years in medicine, I am tired of speaking out in an effort to illuminate this tragedy of a society that has industrialized caring in such a profoundly ineffective way. But I am not done. I am continuing this work...one person at a time. Thank you for sharing this extremely personal and all too familiar story.
Jim, this is a horrifying story well told. Those difficult conversations are hard for the caregivers to deliver, but it’s part of their job. I’m sorry all of you had to go through that. In one similar situation, we encountered a hospice nurse who gave some of the most transparent, informative updates on an older relatives’ prognosis, and even though it wasn’t entirely black-and-white, it was clearly much better than you received. It’s a shame that clearer explanations are rare.
Thanks for sharing, I feel some of your pain, and I’m hoping this discussion helps make things better for others going forward.