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IT IS VIRTUALLYimpossible to put a price on a good death. Right now, death doulas are for people who can afford them, because Medicare doesn’t have the good sense to cover our services the way they cover hospice care. That means I set my own rates—and they vary. It’s hard to figure out whether to charge a flat fee or an hourly rate. If I charge a flat fee for an Alzheimer’s patient who is ninety-four and whose sleeping and breathing habits have been changing, she may live for another two weeks…or she may live for another two years. If I charge $1800 and spend two years with her, it’s not cost effective for me as a business model. But if she dies in two weeks, it’s a reasonable income. I try to base my fee on the illness, the prognosis, and some gut sense of how much the client will need me at the end of life—but the truth is, I win some and I lose some.
I know it feels crass to talk about death in such mercenary terms, but that’s the very problem with death in the first place. We don’t know how to talk about it. We use euphemisms and discuss pearly gates and angels while glossing over the fact that we have to die to get there. We treat it like a mystery, when in fact, it’s the one experience all of us are guaranteed to share.
I’m also painfully aware that having someone with you when you die should not be a privilege but a right. This is heart-centered work, and you don’t go into it to become rich. I would do this work for free. Ihavedone this work for free. I’ve bartered services. I took care of a nail stylist’s mother and received manicures for a year. I got a side of beef from a farmer whose wife died of ALS. I have the luxury of doing this work because in spite of the fact that I run a business, I still have Brian’s professor’s salary to support us.
At my second visit with Win and Felix, they have iced tea sweating in glasses and small almond cakes. I hope they did not go to this trouble for me; I am supposed to make their lives easier, not more cluttered with things to do.
I’ve decided to take her on as a client, if she is similarly inclined to work with me. I keep telling myself it fits into my schedule well—I have several long-range clients with illnesses that will keep them alive for years, rather than weeks—but I know that there is more to it than this. There is something about Win that I cannot tear my eyes from.There but for the grace of God,and all that.
Felix is staring down at his notes. I know, for many caregivers, this blunt conversation is the first time they really, truly understand that the person they love is going to die. Not even the doctor’s diagnosis is as frank. “Do we…have to sign something?”
I wait for him to look at me. “No. But I do have a secret handshake I’m going to have to teach you.” His eyes widen and I smile. “I’m kidding. Yes, there’s paperwork. But we don’t have to worry about that yet. I’m as good as my word, and I am assuming that you are, too.”
I pull out a small notebook and write Win’s name at the top of a blank page. By the time Win dies, this book will be filled—with notes from our visits, memories, requests, medication logs. This is the paper trail she will leave behind. “If you’re feeling up to it,” I say to Win, “I’d like to ask you a few questions to start. Have you had a conversation about a DNR yet with anyone from hospice?”
She tilts her head. “DNR?”
“Do Not Resuscitate. There’s a form for the hospital and one for out-of-hospital. It’s something you sign if you don’t want anything done, should you stop breathing.”
“Like what?” Felix asks.
“Resuscitation. Calling 911.”
“So you mean…”
“Allow natural death to happen,” I say. “Yes.”
Win puts her hand on Felix’s arm. “Baby, that’s the finale here. No matter what.”
“I know. I just…I mean, what if there are other options—”
“On average, people who code and get CPR do live another eighteen months. But you’ll be doing that with cracked ribs, because once compressions are started, by law they have to continue until you’re resuscitated or you are pronounced dead. So…if you do survive, you’ll be in pain, and we also won’t know how long your brain was denied oxygen.”
“And if I don’t want that?” Win asks.
“Then you sign the DNR.”
She looks at Felix and nods sharply.
I ask her about feeding tubes, ventilators, defibrillators—all life-sustaining measures—confirming that she doesn’t want any of those. I talk about medical power of attorney, and financial power of attorney, about sedation, about antibiotics for comfort during UTIs or other infections. I talk about cultural traditions and funeral planning, whether she wants music as she’s dying, or religion, or neither. Who she’d like to be with her at the end, and who she doesn’t want to see. Just because someone is dying doesn’t mean that they can’t call the shots. As I tick off the items, Felix seems to draw further and further into himself, until finally I turn a bright smile toward him. “Do you by any chance have some coffee?” I ask.
He goes into the kitchen to brew some, and as soon as the door swings closed behind him, Win meets my eyes. “Thank you,” she says.
I nod. “He’s not the first husband to be overwhelmed by details.”
“There are times I think this is harder on him than on me. I mean, I get to leave at the end. He’s stuck here, reliving these weeks.”
“I will make sure he’s not alone. I’m here for him, too.” I can hear Felix banging around in the kitchen. “Plus, this next part would have probably put him into a fetal position. Have you thought about what you’d like to happen to your body?”
“You mean like burial or cremation?”
“Those are two options,” I tell Win. “But there are green burials. And aquamation—you put the body in a vat of alkaline solution, like lye, and all the muscles and fat and tissue dissolves, and then the bones are ground up and given back to the family.”
“That sounds like how the Joker died in Batman,” Win murmurs.
“It’s not legal in Massachusetts yet, but it is in Maine.”
