Elder-care and end-of-life issues have been much on my mind, and on my plate, lately. It’s fitting, then, that I had a prolonged and uncomfortable discussion this morning with an elderly patient facing surgery, and with his wife and daughter. The encounter served to remind me again, this time in a professional setting, that far too many people have given inadequate thought to their wishes before end-of-life circumstances might arise.
This fellow had a “DNR” order in place, written upon his admission to the hospital. This order is the physical implementation of his “living will”, supposedly reflecting his considered wishes about end-of-life and resuscitative care. A DNR order means that, should he suffer cardiac arrest or respiratory failure during his hospitalization, we would not subject him to CPR measures to attempt restoration of circulation; electrical shocks to the chest to try to correct abnormal heart rhythms (defibrillation); or placement of a breathing tube to assist with respiration (intubation). Patients have a right to determine their care, and to refuse treatment; DNR orders are the healthcare system’s best attempt to honor that patient right by not subjecting them to unwanted, often invasive and marginally effective, treatment.
For patients facing surgery, however, things are not quite so simple. The operating room is an artificial environment, one in which the concept of a DNR order does not exactly fit. During surgery, we do things to patients which can have effects that, in other circumstances, would trigger a DNR order. These effects can be temporary and correctible, but they might also reflect inevitable progression of the patient’s underlying disease state – which the DNR order would prevent us from addressing if they’d happened to the patient in his hospital bed. It’s not always possible to determine which situation we are facing when things go pear-shaped in the OR. This means that a patient who has a cardiac arrest on the inpatient floor would not get resuscitative efforts, while the same patient suffering a cardiac arrest in the OR might well get resuscitative efforts, contravening his wishes as expressed by the DNR order. You can see the ethical conundrum we face.
In times past, we used a brute-force method of circumventing this quandary: you come to surgery, your DNR order is suspended, period. This method has the advantage of clarity, but is ethically suspect, because we’ve now summarily overridden a patient’s wishes. Our current solution to that problem is to further clarify, and possibly modify, the patient’s DNR order after a further discussion. This is how I found myself at the patient’s bedside an hour before surgery, on ten minutes’ acquaintance, confronting a sick, elderly patient with early dementia, and his equally confused family, with hard-to-explain issues that should have been decided among themselves long before he ever got to the hospital.
We have a form – in healthcare, there’s always a form, because lawyers love documents – the patient has to sign, saying whether he wishes to maintain his DNR order as written, even in the OR; or whether he wishes us to proceed with resuscitative efforts, essentially suspending the DNR. In most cases, the patient will already have a breathing tube in place as part of his anesthetic care, so no choice about that is possible. That leaves mainly the question of whether we’d do chest compressions or electrical defibrillation. You can imagine how difficult it would be to be presented with such a form when you’re sick, possibly confused, and already frightened. Add in a few family members, who are equally out of sorts, and who might not agree among themselves what’s best for Dad, and you can see what a mess this can become.
Healthcare is an industry – a sixth of the American economy, give or take – but it’s also a culture, with its norms, rituals, and customs. Laypeople are often surprised by just how fast events can take on a momentum of their own after they or a family member hit the hospital door. There is often simply no time for careful contemplation of serious matters, under the pressure of sickness and fear, and with the profound knowledge gap that separates patients and caregivers. This knowledge gap, connected as it is with a judgment and experience gap, cannot be bridged with a Google search or two.
I’ll wrap this up with a plea. Talk with your family about your own wishes, after you’ve thought hard about them yourself. Recognize that quantity and quality of life are not the same things; and that there are many, many things that can happen to you that you’d find worse than dying. Make your wishes known, and empower someone you trust to carry them out, by signing advance directives for healthcare – by whatever term those are known in your state. And, for the love of all that’s holy, do it before you actually need to make such decisions. Otherwise events may remove the power of decision from your hands.