The next week my patients were on the other side of the unit. I walked around the corner occasionally to look at Mrs. Hardy and check her monitor to see if she was maintaining or getting worse. She has been getting stronger. Once as I approached her room I heard her voice. She must be breathing on her own now and speaking with the help of a special valve which is placed on the opening of her trach. It has been months since she could speak. Getting her voice back is no small thing, but the voice I hear is full of madness. “No! Don’t! Don’t do that!” she screams, her voice full of panic and fear. Her nurse, Tom, speaks in a soothing voice, “Now Betty, I just have to put your restraints back on because you are not able to make safe decisions right now. You are pulling on your tubes and things and I just can’t let you do that okay? But don’t worry about it, it’s alright (I am not angry with you and you should not feel ashamed). Who will listen to her in this state of mind? No one. She will not be able to participate in her care any more than before.
It becomes more and more complicated the closer you get to it. The next week I catch Susan, Mrs. Hardy’s palliative care nurse, as she is sitting outside her room, reviewing her chart. I ask her what is going on and she tells me she is working on meetings with the family. “Any chances of them letting her go?” I ask. “Well she does not want to die, so withdrawing care would be unethical,” comes the reply, a gentle chastisement, “but we are trying to give them a more clear sense of what her real situation is, and maybe we will be able to place some limitations on her care.” This would mean stipulations like ‘no CPR’ etc.
Everyone wants to get better. Even in the course of our normal lives we are generally dissatisfied with today and hoping for a happier tomorrow. Mrs. Hardy does not want to die. Of course not, she wants to get better. So withdrawing care is out of the question, but then she is not going to get better. In the best case, she will never get out of bed again. She will perhaps go to a skilled nursing or long term care facility until she is overcome by infection. She will be in and out of the ICU until she dies.
Would it really be unethical to withdraw care? I am not so sure any more. I have no urge or eagerness to go into Mrs. Hardy’s room and turn off her machines, but when you consider the resources that are being expended to keep her alive in this state it is staggering. The bed in the ICU alone is somewhere between one and two thousand dollars a day. Then there are the doctor’s fees, fees for every surgical procedure, every x-ray (at least one a day), every scan, and every consult, on and on. This has been going on for several months now and Mrs. Hardy is not going to get better. As nurses we do not have to worry about the expense of it all, but if you think about resources as being limited instead of unlimited, is it really the best decision to expend so much to achieve so little? And if the family really had to pay for it all, would their psychology not change? We spread it out with insurance costs. We give perhaps a quarter of our income for health insurance policies that often do not even cover our day to day expenses. What are we paying for? We are paying for Mrs. Hardy’s care, make no mistake about it.
We are trapped by technological advances. If you can do something, who will decide whether you should do it or not? The doctor? The family? No one wants to say “no,” so we do everything regardless of the expense and the consequences. Would it really be unethical to stop Mrs. Hardy’s care? Maybe not, but I will not be the one to stand up and say so. What fault does she have? She seems to be a nice lady.
The following week my patients are Mrs. Hardy’s neighbors. They have the same hard-to-treat bacteria that she does, and since we are trying to stop it spreading around the unit, the nurses for these patients are not supposed to go into other patient’s rooms and visa-versa. This week I visit with Mrs. Hardy a few times.
As I enter her room she holds out her hand and I give her mine. “Are you tryin to get yourself a man there?” jokes her sitter, a short middle aged woman with obviously limited mental capacity. The sitter seems to see Mrs. Hardy almost as her doll or her pet and talks at Mrs. Hardy without being concerned about her true reality. This is quite common actually – who really wants to think about it too much after all. I ask Mrs. Hardy how she is doing and acknowledge how hard it must be. She seems to appreciate this. She rolls her eyes slightly when the sitter mentions her family. They are probably as unreachable for her as anyone else in some ways. As I look at her, I am thinking about my writing. Should I tell her about it? Would she want to know? Is it egotistical for me to think of myself like this when I am with her? But maybe it will be comforting to her to know. “Mrs. Hardy,” I say, “If someone could tell your story, would you want it to be told?” She lifts her head off the bed and nods emphatically (she is on the vent today, so no talking). “I am trying to write about it. I will try.” I say. She squeezes my hand.
The next day I visit with her she is breathing on her own. I decide not to say anything about our previous conversation. I am not sure if she even recognizes me or if she is simply pleased to have a visitor. She is trying to say something. I put her speaking valve on her trach. “Please give me water! Please! Just a little! It won’t hurt! Please!” Her pleading is like that of a scared, desperate child’s “I’ll have to check with your nurse.” I answer dutifully and I start to feel trapped in a way one often does as a nurse. I start to regret having extended myself. There will be no end to this kind of thing. But I look around the room and see some swabs. Mrs. Hardy is right; a little water will not hurt. I soak three of the little green sponges-on-sticks under the faucet in her room and bring them to her, holding them to her mouth so she can suck and chew the water out of them. She thanks me profusely and then asks me urgently to call her son. She tells me that there are important papers she needs to tell him about. Most likely, she has already told him many times and there will be more opportunities as well. I will not bother him. If I was her nurse, I would mention it to a family member when they called to check. Mrs. Hardy’s family does call at least once a day. “I will let your nurse know.” I assure her. Mrs. Hardy fades. She stares blankly into the room, overwhelmed with fatigue and hankering, she drifts slowly towards sleep. She is asleep most of the time. I forgot to tell her nurse about the papers.