Ars Moriendi.
I’ve been thinking about death somewhat more than usual the last couple of days. A woman in my church, one of the few elderly people we have left, took a bad fall and it is touch and go.
Her five children, all in middle age, have overcome various differences and disasters to flock to her side. For the last several days, they have fretted and wondered and dithered and cried about whether and how to treat her: her blood pressure was dropping, her kidneys weren’t functioning very well. The docs took her off pain meds to try to bring her blood pressure up, though she had an untreated broken shoulder and hip, and she writhed around in the ICU bed, crying out at the least touch. Another case of the doctors routinely choosing length of life over quality of life.
An elderly man in my church went back into the hospital for the 7th time in 8 months, with pneumonia, again. He is always glad to get home, to his pots of soup and homemade red sauce, but how long can he keep this up?
In the midst of those moments, I went to see Kathy from my church, a vibrant woman in her early 60s who got a cancer diagnosis out of nowhere last month. She has been very open and honest about her plans for living and her plans for dying, almost since the first day she heard the words “metastatic pancreatic cancer.” She’s doing chemo for now, but is going to pay careful attention to whether it’s making the life she has left better or worse. She mentioned a New Yorker article by the physician Atul Gawande, that talked about how many patients who agree to enter hospice care actually live longer (depending on what they are being treated for) than their counterparts in active treatment.
I started reading the article today as an exercise in sermon-avoidance, and couldn’t stop. It made me cry, twice (admittedly not hard to do these days). It is one of the best things I have read in a long time (and I recently finished Game of Thrones). I am going to resist the urge to quote long swaths of its delicious wisdom and instead tell you to follow this link right now and go read it yourself. I want to tattoo it on my body. I want to eat it whole.
Why am I having such a passionate response to this article? Because we don’t talk about the reality of death and dying in our culture! What we do is pretend that we are all going to live forever. What we do is make people be very old and very very sick for a very very very long time, because we are too scared that talking about what kind of interventions might help/not help us have the kind of life we hope for will actually invite the Grim Reaper right into the room. We are not scientists. We are scared little superstitious folk.
Instead, here is what actually happens when doctors and terminally ill patients and their families have honest conversations about the choices available to them in treatment:
· they often live longer
· they definitely live better (less pain, a higher level of physical activity, able to enjoy pleasurable activities)
· their mood is improved
· family members related to the patient report significantly lower depression rates 6 months after their loved one’s death than the family of patients who routinely enter what I call the Extraordinary Measures Mill (ICU, ventilator, feeding tube, chest compressions, chemo that isn’t likely to work, etc etc)
Hospice is a bad word in our culture. We think hospice = giving up. But it’s really a form of taking proactive control of the life you have left. Hospice is not just for cancer patients—old age can be the terminal condition you are dying of. And hospice vs medical intervention is not an either/or prospect anymore.
The insurance giant, Aetna, piloted “concurrent care” programs where they let terminally ill patients have the choice of whether to treat vs. receive comfort care in different situations. They got good instruction and resources and medication so that they could stay at home comfortably rather than go into the ER or the ICU (an exhausting prospect) when they had crises. The results were extraordinary. Not only did medical costs go way way down (in one study, use of intensive care units, at $4,000/day, fell by 85%), but they reported a lot of the good stuff I just cited up above.
Gawande interviews a hospice nurse in his article. “She says, ‘Ninety-nine per cent [of my patients] understand they’re dying, but one hundred per cent hope they’re not. They still want to beat their disease.’ The initial visit is always tricky, but she has found ways to smooth things over. ‘A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.”
She said that the way she helps her patients is not by giving answers, but by asking questions. Questions like: What are you most afraid of? What do you want the rest of your life to be like?
One day, this same hospice nurse’s father discovers that he has a tumor on his spine, cancer. He is a retired professor, and the cancer will eventually make him a quadriplegic, but the surgery to slow its growth might also make him a quadriplegic. She finds herself in the position of having to ask her father the questions she routinely asked her patients every day.
She asked him, “I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.” [Isn’t that an amazing question?] She was shocked by his answer: he said, if after he surgery he could eat chocolate ice cream while watching a football game, that would be enough. He had never, to her knowledge, watched a football game in his life! That is why it is so important to ask patients what they really want, rather than put them on a conveyor belt of services and treatments that may just send them into a “warehoused oblivion.”
Gawande reminds us that one of the bestsellers of the 15th century was a little book called Ars Moriendi, The Art of Dying. According to Wikipedia, Ars Moriendi consists of six chapters:
1. Chapter One explains that dying has a good side, and serves to console the dying one that death is not something to be afraid of.
2. Chapter Two outlines the five temptations that beset a dying person, and how to avoid them. These are lack of faith, despair, impatience, spiritual pride, and avarice.
- Chapter Three lists the seven questions to ask the dying one, along with consolation available through the redemptive powers of Christ’s love.
- Chapter Four expresses the need to imitate Christ’s life.
5. Chapter Five addresses the friends and family, outlining the general rules of behavior at the deathbed.
6. Chapter Six includes appropriate prayers to be said for a dying person.
Isn’t that an amazing gem? Don’t we need one of these to combat the toxic fiction of immortality in 21st century culture?
Clergy, doctors, nurses, and family need to remember how to have this conversation. One of my dear friends, sweet Sue of the daily emails during my chemo treatment, happens to be a physical therapist at the hospital where our matriarch lays dying. She came up to visit the family. One of the daughters, struggling with the treatment options, said, “I don’t want to go Kevorkian on her. What if we decide on only comfort care measures, and keep God from working?” Sue said, “Why do you think that God can only work through extraordinary measures?”
I’ll let Atul Gawande finish this post. “The words you use matter. According to experts, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like pity. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”
The Joy Report: We’re going to Mexico on Friday! We’re going to the orphanage where Peter and I used to work and live, when we were young things. Here’s a snap from 1996, of me throwing a birthday party for the kids (doesn’t your heart go out to the little girl outside the door not invited to the party?):
All four of us are going—Carmen’s first visit!—along with 15 other gorgeous people from our church. We’ll spend the week playing with the kids, doing some work projects, making a Mardi Gras Pancake Feast, observing Ash Wednesday together with the orphans. I can’t wait! This is one of the most special places on earth to me, and for the first time I get to be there with my whole family.
My dad did just inform me this morning that there is a new State Department travel advisory for Mexico, including Colima, where we’ll be: carjackings, kidnappings, shootouts, fake security checkpoints on the highways. Oh, well. It’s a much more glamorous way to go than cancer, right? And doesn’t joking about it here mean that it won’t happen?
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