The New York Times and failing the What Would Pat Do (WWPD) test

Yes, while Pat was dying, I did an interview for the Times. It seems a great many people read the New York Times, and the phone has not stopped ringing.

First, let me acknowledge, Pat would be furious with me for sharing his story.

In my defense, for eight years I followed his lead of stoicism when it came to his cancer. Now he is gone, I get to run the show because I need to survive this. I also know he would have understood my loyalty to him and my desire to raise awareness of what had gone so very wrong. First and foremost, Pat always wanted to do the right thing. So, while he may not approved on the how, he would have agreed with the why of my desire to do the interview.

And not long before he died, I told him I was frustrated-d that’s not the right word- enraged about the care he received and that I would be holding people accountable. He too had concerns and raised them with the powers that be. He even talked about a lawsuit, “not for money,” he said, “I just want people to know what happened.” So, I would say, that The New York Times piece was simply the warning shot over the bow.

I am mourning Pat, so I am not sure if I want to devote my time to becoming an avenging angel.

So let me officially apologize to Pat, because he hated my emotional exhibitionism.

Pat also knew how angry I was about how the system failed us. I had to pay out-of-pocket for his hospice nursing care. There was the delay in the PET-scan his insurance company complained was too “expensive.” There were the delays in getting him enough blood and platelets for his crippling anemia. Looking back, they should have never cancelled the appointment with the famous multiple myeloma specialist who had so many “bullets in the gun” to treat Pat. There was fact that he needed to have been in the hospital months ago, under constant care, to give him a fighting chance against this disease. But most of all, his payer fought every treatment test and expense in his care. Pat would say, all the time, “it’s like they want me to die.” The system was trying to cut its losses.

The last month, watching Pat die, witnessing the breakdowns of the health care system, talking to his nurses and doctors and the administrators who managed his care, I have a lot to say to them about what went wrong. Right after his death, I spoke to one of the administrators who managed his care, and she readily acknowledged how badly things had gone. The nurses who care for Cal watched the breakdowns in the system were astounded by what happened. Be assured, I have fact-checked my version of events with people in the medical world, professionals with decades of experience, and none of them dismissed my rage as a widow’s rantings.

As a sociologist, someone who had read thousands of pages of books about the health care system and has spent my life studying organizations and institutions, it was so clear to me how the cogs in the machine were expediting Pat’s death. I would call up the insurance company and leave messages for the nurse practitioner to do better and fight harder for Pat.

I have a growing sense of guilt about what happened to Pat. If I had been more engaged in his care if he had told me what was going on and tried not to be so brave, he may not have beaten the cancer, but he might have had more time. You see, in 2012, right after Pat was diagnosed, I asked his doctors how long he might live. The doctor told me ten years. My late father scolded me for asking such a “stupid” question since now I would have this number locked in my head like a ticking time-bomb. But now, as I write this, and Pat is gone, someone owes me those two years with this wonderful man and father. Pat thought he had more time, he was working on his book and getting ready to go up for full professor.

I had planned our whole lives around the assumption of a decade. Pat would see PJ and Camille finish high school and college. And selfishly, when something happened to Cal, I would not have to face Cal’s death on my own. Indeed, when I read the articles about the “golden age of multiple myeloma” and how GSK was months away from approval for CAR-T cell, I secretly hoped we would get 15 or 20 more years.

So Pat, I am sorry that I shared your story and our anguish.

I will confess that weaponizing my grief granted me a fleeting sense of control and it was a temporary reprieve from the nearly constant weeping.

At the same time, I can honestly say I feel we are owed a debt, and as your widow, I want some sort of reparation. Money is not the issue, it is about getting people to understand that the system is broken. Most widows of the people who are losing their lives right now don’t have a friend at the New York Times and are not cursed with the ability to offer a scholarly analysis of one of the worst periods of their lives.

The one thing I am good at is telling a story.