Life in a body goes right up to and includes everything around the experience of dying. I agree with Katy Butler, author of Knocking on Heaven’s Door, that we don’t have enough conversations about our hopes, fears, desires, and wishes related to our own deaths. I just caught up with a long and engrossing interview with Butler by Sam Mowe in the April 2014 issue of The Sun, the exemplary literary magazine published monthly in Chapel Hill, NC. I paid particular attention to a passage where she talks about what happens if you’re unprepared: “You may find yourself calling 911 in a panic, which means a trip to the ER and often the ICU.” It brought me into vivid contact with the memory of one of the most important days of my life, when I was caring for my friend Bob in the last stages of AIDS-related lymphoma. I had never been present for someone else’s death, and when it was clear the time was coming, as his primary caregiver I couldn’t think of what else to do but exactly that, call 911. In the emergency room at St. Luke’s Roosevelt, a doctor said to me bluntly, “Why did you bring him here? There’s nothing we can do. You should have kept him at home.” He was right. I wished later that I had, but at the time I was completely unprepared, practically and psychologically, to manage a home death.
Have you thought about these questions? I really encourage you to. In this passage from the interview, Butler gives some very helpful guidelines for how those conversations might go.
What are some of the barriers in our culture to talking openly about death?
Number one is that Americans love technology and have too much faith in it. We live with the illusion that our technologies will always save us.
Number two is that we’re unfamiliar with death. There was a time when it would have been rare for a person in middle age not to have lost a child, a parent, or a sibling. People are unpracticed at seeing death and coping with death, because we’ve pushed it to extreme old age and hidden it away in the hospital.
Number three is that we’re just embarrassed to talk about death, even more so than we are to talk about sex. An eighty-five-year-old might say to her kids, “I probably don’t have more than another five years,” and the kids will say, “Oh, Mom, don’t be morbid. You’ve got lots of time. You’re healthy.” We act as though it’s unloving to talk about the reality of death, as if it means we are trying to throw our parents under the bus. We think that we’re being loving when we’re optimistic, but optimism is one of our problems. Americans have a misguided sense of how much, or what sort of, hope is appropriate.
What do you mean?
I mean it’s honest to hope that you might heal your relationships before you die. It’s dishonest to say to a dying person, “We have very good results from this treatment,” when it might mean a 17 percent chance of surviving an extra three months.
In this culture everybody’s trying to put the best spin on reality all the time. Americans feel like failures if they can’t control and manage everything, but death is uncontrollable and unmanageable.
How can we have end-of-life discussions? What should they consist of?
We need to start the discussion way upstream. You have one discussion when you’re totally healthy and the only thing you’re worried about is an accident that leaves you with major brain damage. When you’re in your seventies and eighties and you have multiple chronic illnesses, you have a different conversation with your healthcare provider. At that point you might welcome a relatively peaceful and sudden death and obtain a Do Not Resuscitate bracelet, since your odds of surviving CPR intact are slim anyway. You might want to refuse dialysis or open-heart surgery.
When you’re within a year of dying or you have terminal dementia and have to be locked up, the conversation changes again. Maybe you want comfort care only. Maybe you want to refuse antibiotics or a feeding tube – anything that causes you stress and prolongs your life. You may have come to the point where you see pneumonia as the “old person’s friend,” as doctors used to call it. So long as your pain is addressed, you’re ready to die.
In my family we were blunt. I could ask my dad in the months following his stroke, “Is your life still worth living?” and he didn’t take offense. I could say to my mother, “I think we’re grasping at straws.” Not all families are like this. One good way to start is to ask, “Have you thought about who you want to make medical decisions for you when you can’t make your own?” and “What do you want that person to know?” I can think of no better legacy to leave the next generation than to give them clarity on this. “Just take me out to the field and shoot me” is not an end-of-life plan. Nor is “You’ll know what to do when the time comes,” because loved ones often don’t. Older people should have clear directives in place so they don’t leave their children conflicted and heartbroken and guilty about, say, discontinuing life support.
Likewise, I can think of no greater gift to give a dying parent or spouse than to put him or her on the pathway to a peaceful and timely death free of unnecessary suffering, even if this means opposing the advice of doctors or having intense discussions with other family members. For many people the best death is still a home death. And getting on the pathway to a home death means facing the fact that death is coming long before it knocks on the door. It means bringing in palliative care and then hospice. Otherwise you may find yourself calling 911 in a panic, which means a trip to the ER and often the ICU.
I don’t think we should see these discussions as strictly medical or legal. They’re not just pieces of paper. They are discussions about your deepest values. Whom do I love and trust? What makes my life worth living? Do I have a right to say, “Enough”? How do I want to die? What do I owe my descendants? When is it OK to let go?