A Reminder About Confidentiality

A "tweet" from Dr. Christian Sinclair (ctsinclair on Twitter) reminds me to remind my readers of something: None of the patient names mentioned in this blog are real. In some cases I've also changed a biographical detail or two to further conceal someone's identity.  If you read a post and think you recognize yourself or your loved one, please understand that you are probably the only person in the world who'd be able to do so. And send me a comment so that I can respond to any concerns you might have about privacy.

I thank you and continue to hope that these stories bring wisdom and comfort to those who read them.

Up

There's an old line -- from Al Franken, I think -- that "denial ain't just a river in Egypt." Our death-denying culture makes it hard for any family to accept that a loved one is dying. Sometimes it's the dying person who has to show the family the way.

Rebecca was well into her nineties with terrible lungs. To survive, she required the use of a BiPAP (pronounced with a long "i") machine. "Bi-level positive airway pressure" is a way to move air in and out of the lungs without the patient having to exert much effort. It's a breathing machine without a tube in the patient's throat. But it's not so pleasant for anyone, much less an old woman who'd been sick for a long time. There's a tight-fighting mask over much of the face that can induce terrible claustrophobia.

Rebecca's children told me that she'd been wanting to die for a long time. "She wants to join our dad," they told me. The three adult kids had been resisting their mother's entreaties, but now they were convinced. I went to the bedside. Rebecca was lucid when I asked her what she wanted. She pointed a wizened figure at the ceiling and mouthed, "Up. With him."

I spent a couple of hours with the children that day and the next, going over their understanding of their mom's illness and answering questions about how we might manage the withdrawal of the BiPAP. They told me over and over again, "Mom's wanted this for a long time, and she finally persuaded us." By the time we were ready, Rebecca was barely arousable. We gave some simple medications -- for shortness of breath, for anxiety, for congestion -- and took the mask off. She barely stirred. The children and the nurse working with me felt she was completely comfortable. Forty-five minutes later, her shallow breathing stopped. Then there were tears, and hugs, and prayers.

Everyone deserves a gentle passing from this world. To get there sometimes requires everyone in the family to look up and see what's coming. With quiet determination and her index finger, Rebecca got her family to see past their sorrow. I'm pretty sure she went up.

Illegal

She was old, in the country illegally, and dying of AIDS.

When I met Anne-Marie, she'd already been in the hospital for several weeks. Her relatives back home in Latin America had rejected her because of her illness. Her children in the United States danced around the question of whether they'd take her in. Because she was undocumented, she had no access to Medicaid or any other public programs to fund her care. There have been published reports of hospitals loading sick illegal aliens into airplanes and flying them off to their home countries -- a form of medical deportation, if you will. We weren't going to do that; it's contrary to everything we in the hospice world believe in. So we enrolled her in hospice, ate the cost, and Anne-Marie stayed in her hospital bed.

She was barely arousable and was so thin that a concentration camp survivor would have looked positively obese by comparison. I don't think I've ever had an adult patient whose width from shoulder to shoulder was so small. She never seemed to have a visitor. One morning I discovered her silently grimacing. Pain medication had been ordered as needed, but how does an obtunded patient signal her need? We quickly placed her on a morphine drip at a low dose. Her face relaxed, there was no more grimacing, and she died in apparent comfort a few days later.

One shouldn't have to die alone or in pain. Did her legal status affect the way Anne-Marie was assessed and cared for? I hope the answer is no. Life's end is hard enough already.