Dying On Our Own Terms
We need to be thinking about what we want at the end of life…now, when we are healthy
Overall, 20% of people who die in the U.S. are admitted to an intensive care unit before their death. That is according to a recent study published in the Journal of the American Medical Association’s Open Network describing the state of end of life care in America’s ICUs. As an intensive care unit doctor, the findings were of great interest to me.
The study found that approximately 25% of patients experienced at least one significant pain episode in the last day of life. More than 40% of patients experienced delirium in the last day of life. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize delirium in our patients. And what I found fascinating was that an ICU with an open visitation policy — meaning anyone can visit at any time of day or night — was associated with a higher likelihood of patients experiencing pain before their death.
There are a number of other findings of the study that send a clear message that, as clinicians caring for people at the end of their lives, we need to do a much better job. At the same time, we the public have work of our own as well. We need to figure out — now, when we are healthy — how we want to die.
There is no “right way” to die. We need to ask ourselves, “what do I want when it is time for me to die?” What are my values and wishes with respect to the end of life?
I get it. This is not a pleasant subject. Very few people want to think about their mortality. At the same time, all of us are going to die. None of us knows when this will happen; none of us knows where this will happen; none of us knows how this will happen. And while we can’t control many aspects of our death, we can control the terms of our death.
The study found that, in more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.
Now, if your death is sudden and unexpected, it would make sense to be getting CPR on a ventilator. Yet, I would venture to guess that many of these deaths were not unexpected, and thus we doctors need to know if dying on a machine with your chest being pounded on is something that you or your loved one would want.
See, that’s the thing about “doing everything.” Many of us do not know what that means. Of course, if someone is suffering from trauma or an acute critical illness — sepsis, for example — there is nothing I would not do to try to save their life. It is why I became a doctor in the first place.
At the same time, for some people, “doing everything” may mean performing invasive, painful procedures that will not improve their overall outcome. It may mean dying on a ventilator while getting CPR. Now, CPR is not as nice and clean as the plethora of medical TV shows make it seem. It is rough; it hurts like hell; and we frequently break ribs.
And so, we need to ask ourselves, “what do I want when it is time for me to die?” What are my values and wishes with respect to the end of life? If the answer to that question is truly “do everything,” even if it means dying on a machine, then that is fine. If the answer to that question is other than this, this is fine also.
We need to articulate that answer to our doctors, in their offices, when we are getting our routine checkups. If we get admitted to the hospital, even for elective surgery, we need to articulate that answer to the doctors and nurses taking care of us. Even if we never use the healthcare system, the answer to how we want to die needs to be answered by us and placed — in black and white — in what is called an “advanced directive,” or more commonly known as a “living will.”
Advanced directives are documents that outline our wishes at the end of life. They can contain statements such as, “I want my life prolonged by all means necessary,” or they can have a statement like this:
If at any time I should have an incurable and irreversible injury, disease, or illness judged to be a terminal condition by my attending physician who has personally examined me and has determined that my death is imminent except for death delaying procedures, I direct that such procedures which would only prolong the dying process be withheld or withdrawn, and that I be permitted to die naturally with only the administration of medication, sustenance, or the performance of any medical procedure deemed necessary by my attending physician to provide me with comfort care.
As an ICU doctor, I have had countless discussions with the families of my critically ill patients trying to get an answer like those articulated in an advanced directive. They are not fun conversations, and they are essential to have because, I do not want to do anything that is not consistent with my patient’s values or wishes. If we have an advanced directive completed beforehand, then there is no guessing about the answer to the question of “what do we want at the end of our life?”
For me, if my death is inevitable, I don’t want to die on a ventilator or getting CPR. In my living will, which I completed a long time ago, I spell out in discreet detail what I want done at the time of my death: let me die in peace and meet my Creator and be reunited with my daughter.
There is no “right way” to die. It is not better or worse to die on a machine. The only “right way” to die is doing so on our own terms. And no one knows what those terms are except ourselves. And so, we need to articulate the terms of our death now, while we are alive and healthy, so that we do not face our inevitable deaths in a manner contrary to our wishes. It is of the utmost — dare I say, life and death — importance.