When I was in Boston, I had a patient with a brain tumor and two adult sons. She had a malignant, progressive brain tumor and had been unresponsive for months. Her prognosis was poor. One son, I’ll call him Peter, thought she would have wanted to be DNR/DNI: if her heart stops, if her breathing stops, we ought to let nature take its course. The other son, I’ll call him Alex, who also happened to have some psychiatric problems, disagreed.
“She understands everything I say,” he would say. ” She tells me things.” The woman was unresponsive – no eye opening, no movement, and certainly no talking – for months. We had had many family meetings and at one of them, when presented with the grave prognosis yet again, Alex exclaimed: “What about a brain transplant?” This seemed to me an example of how unreasonable patient expectations can sometimes be. But then I Googled it and saw you could get a brain transplant $500,000: they would transplant your brain into a better body.
We called the ethics team to help us communicate with the family. The ethics expert, a physician, put the question in a different light for us. We had perceived the situation as the problem of a dying woman who would not have wanted to be kept alive by artificial means in this vegetative state. What we feared was that when her heart stopped, instead of dying in peace, she would suffer at our hands some traumatic procedures and, if she did survive, we would possibly extend her vegetative state for much longer. Her children’s job in being her decision-makers was to tell us, as Peter did, that she wouldn’t have wanted to undergo invasive procedures to be kept alive in this state. Peter, who knew his mother would not have wanted to have more done just to stay in this state, agreed with this interpretation of the situation.
But, according to our ethicist, a prolonged vegetative state was not the worst outcome. At least it was not the outcome that the patient would have feared the most. The worst outcome would be if, regardless of her fate, what transpired caused her two sons to fight and blame each other. The worst outcome would be if Alex blamed Peter for killing his mother, or if Peter blamed Alex for making his mother suffer. Framed in this way, we understood that we had it wrong. Our job was not to support Peter in getting Alex to agree to what their mother surely would have wanted. Our job was to help Peter and Alex come to terms with what was happening and to avoid augmenting a rift between them. She would die, and sooner rather than later, but if we could help her sons through this time, a time when even the sanest of us are irrational and unreasonable, then that would be the best we could do.
Disagreement among family members during trying times is common. We are well aware of the difficulty of getting through Thanksgiving dinner with relatives, let alone a difficult family decision about a loved one’s death. Disagreement among siblings is particularly common when children move away from elderly parents and don’t see their daily struggles. When the children who live in the area see their parent suffer, they tell us their parent would not have wanted aggressive measures. But the out of town child disagrees. “He was fine,” he says.
Trying to bridge that gap is difficult for the child who is witness to the parent’s suffering, much as it is for the doctors at whose hands the parent is suffering. It is impossible to capture what being critically ill looks like, impossible to tell others who haven’t seen it for themselves. Impossible to explain what it feels like to walk in and see the person you love, this actual human being who raised you, who held your hand, who said things to you, to see this person not as themselves. It is impossible to bear seeing the tubes and catheters penetrating virtually every orifice, seeing that they don’t respond to your voice, they don’t open their eyes, they don’t recognize who you are. We feel so invincible when we are young, but in sickness, we are, none of us, all that different. It is impossible to see this person, who in your head is still alive and truly themselves, now so close to death that it is obvious the road back to you is far less likely than the road forward.
It is a picture that all the improbable statistics fail to convey. Your loved one will most likely die, yes. But why not play the odds – even a 1% chance might be worth a roll of the dice. What we fail to communicate, what people fail to see too often until they witness the violations of their loved ones at our hands, is that there are things worse than death. Walking in an intensive care unit and seeing a loved one who is likely to spend however little time is left shuffled between various acute and chronic care units, for many, is a fate worse than death.
But it isn’t a fate worse than death for everyone. Every time I swallow the lump in my throat to broach the subject of death with my patients, I think of that woman in Boston and her two sons. I ask the question of my patients in clinic while they are fully themselves, and I especially ask when their family is around.
“What would you want? What is it that makes life worth living for you?” I ask them. You don’t have to tell me, you don’t even have to write it down. But please, make sure you tell your family, and tell ALL of your family. If ever the time comes, help your loved ones come together to cope with losing you. Do not let them be driven apart by guilt and disparate answers to these questions on your behalf.