I’m ANGRY. Again. Recently I met with Tidewell Hospice leaders after sending a letter full of the ways I felt they failed my husband and me with their care. They robbed us of our quality of life in the last few months. I came to the meeting with a list of ideas I had about how they could do a better job for patients who have neurological diseases, rare diseases, or lengthy stays. I sent the list by email after we met.
It took a lot of energy and courage to meet. I had to prepare by reviewing the worst months of our lives. I had to manage the anger and sadness that welled up every time I sat down to write down my thoughts, just as I am managing it now – my shoulders and neck tightening, the tears welling up, the lump in my stomach.
I haven’t heard back though it’s been 6 weeks. Not a thank you for your time, not a sorry, not any info about actions they are taking, in spite of them telling me they would be taking action. I did receive a request to leave them a legacy gift – mention them in my will. HA.
I met with the CEO, the Medical Director, and the Nurse Director of Home Care teams – people who have the power to take action. My fingers are shaking as I type, full of the impotence I felt while they provided their care, and my continued inability to affect change.
As I look back over the course of his disease I see so many gaping holes in the healthcare system for his neurological disease, that seem more readily filled in the field of cancer treament.
I remember when he first received the Parkinson’s Disease diagnosis after 5 rounds of previous specialists and incorrect diagnoses. We went to this new neurologist expecting to talk about surgery to mitigate what we thought were symptoms of essential tremor and she just announced it was Parkinson’s. It was a bomb dropping for us, but she kept talking, though we couldn’t hear her.
Doctors are SO poorly prepared to give bad news! And the reimbursement system doesn’t give them the necessary time to spend on doing it well.
When new doctors started suggesting Larry might have something other than Parkinson’s, I remember one particularly staggering moment. The neurologist said “it might be ALS, so I’ll arrange some tests.” He sounded sort of excited about the diagnosis process. His only advice was “don’t believe what your read online about life expectancy.”
We moved on to the next neurologist who confirmed it was MSA, saying “I know this is rough news. We will do our best to keep you comfortable and enjoying a good quality of life for as long as possible.”
At least there was some recognition of the emotional import of the news.
But who was the ‘we’ who would help us? We saw him every three months for 10 minutes. Who else could we turn to? Google became our best friend. We were faced with a terminal diagnosis with no support.
As his symptoms progressed we made the rounds from the primary care doctor to the specialists – gastroeterologist, urologist, dermatologist, neurologist, and then with pulmonology, cardiology. There was no coordination of care, no teamwork, no place for our emotions. We had no support groups, as the Parkinson’s groups we’d previously attended were not dealing with the terminal diagnosis that we were dealing with.
I looked for palliative care specialists. I found one at the hospital and left a message but received no reply. We weren’t hospitalized, after all. I asked the neurologist. He said that palliative care was what you received in the hospital and that hospice was what you received at home, but he didn’t think we’d qualify for hospice yet.
I knew from my daughter who is a researcher in hospice and palliative care that he wasn’t right in the academic definitions, but he WAS right in the practical definition.
In essence it was the practical definition of hospice, the way it is defined and paid for that finally did us in. Tidewell Hospice’s complete lack of understanding of the course of his neurological disease. The “six months til death or you’re out” definition, that sent us into a tailspin those last three months.
Okay, I thought I was past my anger but as I write this I realize I’m not at all past it. I was hoping that the list of ideas I submitted to Tidewell Hospice, which I’ll share in another post as this one is already too long, might at least help provide better care for the next neurological patient, making some good come from our bad care. But no. It seems my experience of them not listening continues.
So tomorrow I will write an open letter to all hospices. I will write all the ways I wish we had received care.