Understanding the high cost of saying goodbye

Dan Gorenstein Mar 22, 2013

Understanding the high cost of saying goodbye

Dan Gorenstein Mar 22, 2013

Janet Dean wasn’t supposed to spend her final days like this.

“She must have had 40 lbs. of fluid. Her face was all swollen. She had the breathing tube in there that was taped to her face,” says Richard Dean, Janet’s husband.

Gone was his sweetheart — the bathing beauty he met as a lifeguard back at Orchard Beach in 1964. This 44-year marriage between the daughter of a New York City cab driver and the son of a New York City bus driver was nearly over.

“At the end, she wasn’t the woman I loved. She wasn’t the Janet that I lived with. She was this organism that was struggling on the table,” he says.

This wasn’t the plan. Doctors had told Janet in the spring of 2009 the pain in her stomach was actually stage-four ovarian cancer. She and her husband quickly — easily — made a pact. The pact lots of us make when we think about death. Richard remembers his wife’s words.

“Don’t extend this more than it needs to be. If I don’t have a good chance at life, I’ll happily accept my death,” says Dean.

So how did they end up here — where the desire for a quiet, unplugged death unravels and a loving husband breaks a final promise? Dean says he sees it now — as his wife lay there in the ICU — she was dying. But he couldn’t see it then.

“I think what happens is when you are in the midst of a medical crisis. You actually don’t know where you are. You don’t have any sense of, ‘Am I a day away from dying? Is recovery possible?'” says Dean. “We actually don’t know that.”

Dean had promised his wife he wouldn’t pull out all the stops to keep her alive. That she would die at home surrounded by her family, not like this — in an ICU hooked up to machines.  

“I was her caregiver. That I would be there. That I knew her wishes. That wasn’t the way she wanted to be. And that wasn’t the way she wanted to leave,” he says.
Again, he did what many people do when hope starts running out — he looked to Janet’s team of doctors and nurses — counting on modern medicine to rescue them both.

“Medical people find it hard to deal with that. They’ve got to do something. We can do this, we can do this, we can do this,” he says.

It was a Hail Mary, a super rare antibiotic. So exceptional that Dean says one course of the drug cost $20,000.

“The doctors said if we do this, it would give her a chance to get back to where she was, which was maybe a 3-5 percent chance of recovery,” he says.

Yes, a 3 percent to 5 percent chance. The very definition of an extraordinary  measure where the doctors, the hospital, the patient, the insurers together take a flier on a crazy expensive attempt to help one person live a little bit longer… maybe. From a policy perspective it’s madness. But if it’s your mother or your son, or the wife you promised would die in her own bed surrounded by family, then it’s different. Right?

Doctors administered the first shot. It didn’t work.

“I looked into her eyes and she looked into my eyes and we connected. And I told her I loved her. I got her best effort at a smile,” says Dean. “And I knew.”

To this day, three years later, Dean regrets his decisions. The rounds and rounds of chemo, the slippery slope to the ICU, and especially the shot. He thinks about wasted resources, whether some other person could have actually used those antibiotics. But mostly, he blames himself for letting the situation spin out of control — for losing sight of what his wife wanted most.

“I needed to have done more, done better. It was a traumatic time for me. That image stays with me,” says Dean. “The rational side of me understands that I did the best I could, but feel like I could have done better.”

The way Janet died cost her husband. And it cost us. The biggest chunk of health care spending takes place in the last year of life — $270 billion. People are at their sickest and emotion drives cost more than medicine. Some health care people believe we’re not too far from a time when the health care system will do a better job letting us know when it’s time to let go.

For Dean — in his final days he’s going to look his doctors in the eye and demand to know when it’s his time. At least, he says, that’s his plan.

Richard Dean is a member of the Patient and Family Advisory Council at Johns Hopkins Hospital.

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