“I’m dying.” Those were the last words my godmother said to me on New Year’s Eve. “No,” I responded, believing it. She was just about to be discharged after a four-week hospital stay.
She wasn’t hooked up to monitors despite the labored breathing that led to her admittance. Staff hadn’t checked on her in at least 90 minutes. My godmother had asked me the day before to get her sequined snow boots to wear at the rehab facility. Earlier she had handled five weeks of chemotherapy well, and doctors said they caught everything.
Shortly after those last words, she lost consciousness.
The physician who we met with during a particularly rough Christmas Day called then to let us know that my godmother was very ill.
I asked how they could have considered discharging her that day.
She hadn’t made that decision. She said she wouldn’t have approved that decision.
I called for someone to take her vitals, worried that her shortness of breath could lead to oxygen deficiency.
When the nursing assistant wasn’t able to capture her blood pressure or pulse, she called for the nurse who ordered a rapid response.
“This is just to get her an ICU bed fast,” the nurse said.
Then a horde of clinicians stormed the room.
Less than a minute later, a doctor we’d never met before came out and asked if everyone we wanted to be there was present.
“She’s dying,” he said, adding that nothing would be done to intervene in her passing since she had signed a DNR. None of the family members there could understand or believe what was happening. Earlier that day we were preparing to move her to rehab and now we were told these would be her last moments.
We were told she had developed sepsis and her liver was failing. Her breast cancer had metastasized to her liver.
We had no idea. But the doctor said that information was right in her notes.
It didn’t make sense. Had doctors failed to communicate the realities of the situation to us or to each other?
Patients in fragile health need a champion, and I had been by her side nearly every day for a month. Other relatives called for daily updates.
But in those last moments with her, it finally occurred to me that we had never asked for a comprehensive care plan. I hadn’t asked if all of the clinicians, some of whom we only saw once during that last month, had a plan to keep my godmother alive.
I don’t know if that would have made enough of a difference. But a friend whose own mother died in hospice during these past holidays had a completely different experience.
The communication seemed to have been clearer. The expectations were transparent. For example, her mother was given medication to help ease her passing.
The doctor tending to my godmother said she would also receive something to ease pain and anxiety.
More than two hours passed between his statement and her time of death. I never left her side but never saw medication administered.
Healthcare is personal in its best and worst moments, and this is my very personal story, but it opened my eyes to the confusion and terror that even someone familiar with the industry can experience. There is a nagging regret about what more I could have done. I can’t help but wish some better practices were in place. I wish the rounds had been virtual, her medical records were more accessible and the clinicians better communicated treatments with us and each other.
Those wishes are also the expressed goals of our industry’s leaders.
But these changes need to be more than goals … before they become personal for any of you.