End of Life Decisions
These decisions are thankfully not an everyday experience, but still common for a neurologist to be involved in. Whereas there is a lot of intellectual angst about the topic, when you're at the bedside, it's mostly on a very personal level.
In many cases, you have a situation where someone was "perfectly Ok" one moment, then some disaster strikes -- a major stroke, cardiac arrest, or pulmonary embolus. Maybe the person came in the hospital for some routine procedure when disaster struck, either rapidly or in some sequential fashion, as one complication after another set in.
There is, of course, the rather straightforward concept of brain death, implying a total loss of all brain activity, in which case it doesn't matter how strenuously you try, you will not keep this person alive in any sense, since it tends to lead to circulatory collapse. When the blood vessels have no tone in the muscles of their walls, you simply cannot sustain a blood pressure even with medications or even stimulating the heart.
Mostly we are dealing with something far less than that, just a brain severely damaged in some patchy sort of way. So we try to assess, prognosticate what's ahead. A recent patient, a woman in her 40s, suddenly collapsed at home, EMS came, shocked the heart into a viable rhythm, she went to emergency cardiac catheterization where stents were placed, then to the hypothermia protocol, where patients are cooled for 24 hours, something shown to help protect the brain.
In her case, it wasn't enough. Twenty-four hours pass, then 48, 72 and beyond, and still only a very, very few signs of reactivity. Her EEG wasn't flat, but her overall condition indicated that there was severe, widespread damage, and especially involving deep brain structures. As I often explain to families, the brain is arranged something like a funnel, where everything coming in and going out passes through the neck of that funnel.
If the damage is only in this funnel neck, it might cause locked-in syndrome, in which a person might be quite conscious, yet simply unable to interact with anyone. There is a French film, The Butterfly and the Sarcophagus which is a true story about such a patient.
This woman's EEG did not suggest this, but lots of damage in various locations. So now it comes to the family to decide what we do. I do not, or try not to advocate any course of action, but mainly describe what I see, and make sure that they understand options. The easiest option for the short-term is to punt, just continuing to wait. But after many days pass, with no further improvement, we have to make decisions.
We can continue to maintain everything, ventilator support as needed, start tube feedings, and begin looking toward long-term care. The term persistent vegetative state comes into the conversation. It implies that the person is unlikely to become consciously aware of their surroundings, and I think it's important to keep a general commonsense notion of 'consciously aware', not some absolute suggestion that there is no reactivity to sounds, to voices, to stimuli. Generally, vegetative patients do not stay in a coma. Eventually they develop some kind of states that look like waking and others that look like sleeping, along with some minimal reactivity.
There are those who either on some religious grounds, or perhaps their own fears and anxieties, cling to any signs of life, interpret every movement, twitch, reflex, eye motion as signs that the person is conscious. But what kind of consciousness is this?
I think we can't help but introduce some personal perspectives at this point. Would I want to exist like this? Would I want this for anyone in my family? Long-term care has expenses, but this isn't about the expense, it's about my own sense of life worth living. Why would I want to cling to every last heart beat, every last breath inside a body chained to a bed with feedings, and no ability to interact with anyone? Not for me. But I also add that this time it's not my decision, and whatever you decide, you need to make sure you are comfortable with the decision, since it's one of the most important decisions you will ever make. Oddly enough, we mostly don't make this decision for ourself, living wills notwithstanding. It's going to be make by our family.
I also take care of ALS patients (Lou Gehrig's disease), and there reaches a time when, even though the brain is still Ok, you become a prisoner in your own body, unable to eat, unable to do the least thing for yourself. You never know what you will do until faced with the choice, but I don't think I could follow Stephen Hawking's example.
And so, when the decision came from this young woman's family, it was that they didn't see the future giving them back the woman, the sister that they knew, and knowing her felt comfortable that this is how she would see it too. So care was withdrawn, she was made comfortable, and we let her go.