The end of life is a part of life. It should be part of our legacy, not a desperate last-ditch effort to escape the inescapable. Talk to your family and your doctor now and on a regular basis as your condition changes. Take control of your legacy.
A few things have changed in medicine over the last few decades. Okay, a lot has changed, and most of it good. But along with the improvements in patient care there has been an exponential increase in expectations. We’ve somehow gone from “your loved one has a life threatening illness and we will do what we can to treat it and in the meantime ensure they don’t suffer” to “your loved one has a life threatening illness that we have the capacity to cure, and if we don’t we will have done something wrong.”
The problem is, last I checked, everyone dies. Let me say that again for good measure. Everyone. Dies. The problem is not with that truth alone, but with the fact that patients with terminal illnesses – and their caregivers – rarely understand their mortality. And when patients and families have unrealistic expectations about what their doctors can accomplish, many people die in a way they never planned for or wanted: in the hospital, dependent on strangers for the basics such as eating and bathing, and often hooked up to machines.
If that makes you feel hopeless, you’re not alone. Many doctors and other healthcare professionals I work with feel that way, too. In the hospital, your code status – whether you want to be resuscitated or not when your heart stops – has become a sort of surrogate for determining whether you really understand your prognosis. Of course, it’s not quite that simple. We know there are other considerations, such as deeply ingrained core values and past experiences with death – good or bad – that play into a patient’s wishes about their death. But the hospital is often the worst place to begin to have these important conversations. Patients in the hospital are sick, they’re scared, and they usually have no prior relationship with the physician who is trying to paint a realistic picture of their condition.
Everyone in healthcare – assuming they don’t have their head in the sand – knows that the system, especially regarding end of life care, is terribly broken. While I believe we are on the path to improving this (within the last year, Medicare approved payment for voluntary end-of-life counseling), we still have a long way to go. But there are things patients can do to take back control of their health and the health of their loved ones.
- Understand What Resuscitation Is:It almost uniformly involves chest compressions, intravenous medications, mechanical ventilation, and defibrillation. Currently, resuscitation is performed unless a patient has “opted out” in the form of a DNAR order (Do Not Attempt Resuscitation). Many people in healthcare feel that resuscitation should be approached like any other procedure in medicine, requiring consent from a patient to initiate it in the first place. And in the case of resuscitation – when the patient and family goal is not only survival, but a return to prior level of functioning – the chances of success are alarmingly low. After all, if a doctor offered you a surgery that had a 1.7% chance of improving your condition, was painful and distressing, and had to be done without sedation or pain control of any kind, you may just choose not to proceed.
Patients and their family members are often presented with the ever-important “code conversation” in the following way: “If your heart stops or you stop breathing, do you want us to do everything?” For a doctor, it’s a lazy way of asking “Would you want to be resuscitated?” without explaining exactly what that entails. But what patients often hear is: “Do you want us to do everything or nothing?” or, worse: “I think you might die during this hospitalization.”
Of course, neither of those things is what the physician is really trying to convey with this question. First, there is a lot we can offer in the way of treatment short of resuscitation. Many times, our treatments are able to circumvent the need for resuscitation altogether. And, even if death is unavoidable, there is so much we can offer patients and families to reduce suffering and provide support. We, as a society, often equate doing “everything” will showing our love. (“I will never let mom die.”) Many times, nothing could be farther from the truth. As people age and their chronic illnesses progress, quality of life – rather than quantity of time – should be the central focus. But, as we see too often, it rarely is. Second, we are almost never implying that death is imminent with this question. We try to bring up the issue of code status with every admission. Since we don’t have a crystal ball, we can’t always predict a medical emergency (sometimes, yes, we pretty much know it’s coming). But regardless, we want to be prepared to act, at a moment’s notice if necessary, in a way that respects your wishes.
We, as doctors, as a healthcare system, cannot afford to be poor communicators about this issue. But patients and families, for their parts, cannot afford to be uninformed.
- Understand What Resuscitation Is Not: It is not a guarantee of survival, and it’s certainly not a guarantee of survival with the same quality of life you enjoyed previously (or even a quality of life you deem acceptable). We’ll talk about this concept a little more below.
The information for this article was obtained from review of the articles below and conversations with Alisha Benner, MD, who has conducted research regarding end-of-life care.