His wife is dying. If she’s lucky, she will be dead before you read this. If he has his way, she will hang on — for what purpose I am not sure, since she is now barely conscious and in terrible pain — but, in his words, she is “not ready to close the curtain.” He cannot bring himself to say the D-word out loud.
Joe — not his real name — called me last night. I am not sure for what purpose the call was either, except he’s quite understandably angry and I was a handy person to be angry with for a while. His wife was a supporter of an organization I serve, as a board member and a one-on-one client volunteer. Compassion and Choices N.CA is a chapter of the national Compassion and Choices nonprofit organization. We advocate for everyone’s right to a humane and compassionate death, which Cathy — not her real name — is not having. We also advocate for changing the laws that ban physician aid in dying, and the right of a terminally ill, mentally competent adult to hasten his or her own dying if living a few more days or weeks becomes unbearable. Cathy’s life is past unbearable by now.
After suffering for several months with back pain, trying chiropractic sessions and over-the-counter medications, Cathy wound up in an emergency room in mid-November, almost accidentally having an MRI that showed the tumors throughout her body. Lung cancer had metastasized to her brain, spine and almost everywhere else. THIS IS A GOOD TIME TO CALL HOSPICE. Joe encouraged Cathy to fight on. She is in terrible pain, and worse than the pain, Joe says, is the difficulty she has breathing, which keeps her from sleeping because she feels like she’s drowning — “but she doesn’t scream out, exactly…” he said. I wonder how heroic she must need to be for him. She is down to 89 pounds.
As gently as possible, I suggested he call one of several excellent local hospice organizations which I’d earlier mentioned to Cathy’s friend who connected us. As a matter of fact, Joe said, he had already called one of them, they’d been over, he was impressed with them. I was almost beginning to breathe myself when he added that he still wanted to talk with the other I had mentioned (Big mistake. Why did I do that?) and had made an appointment with them to come after the weekend. I suggested they would not mind coming on a weekend.
Denial is a perfectly legal way to deal with things, but it should have its limits. If your spouse, partner, child, friend or parent is terminally ill and in unremitting pain, hospice can be the kindest word you have ever spoken. Hospice care IS NOT about “giving up,” or about dying. It is about comfort, pain management, living, peace. It is entirely possible to sign up for hospice care, change your mind and start some newly-discovered intervention later if one should be found. Probably at some point, you will say the D-word out loud. It won’t kill you.
Joe and Cathy are highly educated, financially well off, widely known and admired. He spoke of moving her to their second home nearby where she could enjoy the ocean, and perhaps take time “to say goodbye to her friends when she feels a little better.”
Fran, you’ve powerfully, but sensitively, framed this important issue. When my husband was practicing Internal Medicine, he encountered this often and was always saddened and frustrated by it.
Thanks! I’m glad you felt it sensitive; I was afraid my own sadness, frustration and rage were predominant. Our culture REALLY needs to change in its attitudes about “forever-preventable” death.
Thanks, Caitlin. I stay on this soapbox because simple conversations, before the crisis, can often avert terror and denial later. I’m glad your stepmother’s last days were done right.
Denial is powerful stuff. My stepmother died in her bed at home with hospice care, easily obtained in her Canadian city. No one wants to admit their beloved is about to die, even when it’s right in front of them. I agree with you, but terror and denial are stronger than rational decision-making at that point.