Death is not a tidy process. I’ve answered too many 3 am pages from the hospital to know that death does not honor anyone’s schedule. Death can arrive under the stark glare of fluorescent lighting and the faint whiff of hand sanitizer, with an unknown doctor mouthing the dreaded words, “I am so sorry.”
Most middle-of-the-night pages have predictable endings. Chaplains at my hospital are paged in if a death is expected. If the visit can wait till the morning, we sleep through the night without the intrusion of the pager or a call to a nurse who shares the details of the patient on the incoming helicopter or ambulance. When a chaplain is paged in, we know why we are there. We are to help soften the landing of what might be the worst night of someone’s life. We are there to hold a hand, to listen, and occasionally distract the family from viewing the heroic and sometimes forceful efforts of the medical team as they try to save a life.
One night I entered the ICU waiting room to find two people huddled in the corner of an otherwise empty room; my people, the reason for my page. One of them looked up and casually asked me if I always worked the third shift. An off-hand yet telling question; they did not know. They did not know that the medical team did not expect their loved one to see morning, that I had been paged in specifically for them. They did not know this night would sear their hearts and engrave this scene in their memory for the rest of their lives.
This is the back story that I have come to expect with dead-of-night pages; death, heartache and unexpected goodbyes. As a sound sleeper, one who does not bound out of bed wide awake, I responded to one page with utter confusion. The nurse informed me that her patient, an older man in his 80’s with lung cancer, had decided to stop kidney dialysis. “Wait, what?” I said. “The patient wants to stop dialysis,” she said again matter-of-factly, as if this explained the reason for the middle of the night call. “uh…but he’s not going to die tonight” I said. Even in my fog, I knew his decision would ultimately be fatal, but not immediate, not tonight. This awareness gave way to an internal monologue that shifted from confusion to irritation. She woke me up to visit a patient in the middle of the night for this? My feet were cold on the bathroom tile, my temporary refuge so my call would not wake my husband. But my bed was still warm, and I pushed back hard. Surely this visit could wait till the morning.
A decision to end dialysis is not one taken lightly. Was the patient fully aware of the consequences of his decision? Was he clear and decisive about his choice, or was there any wavering or hint he should be referred for an evaluation? All good questions, but soon I realized, not the right questions for this night. The decision to end dialysis had churned up plenty of anxiety, just not the patient’s.
The patient seemed resolved with his difficult decision. The nurse, however, was another story. Tonight, my job would be different. I would come in for her, attending to her angst about a patient who was making an active choice to die a natural death, a death without the intervention of machines and technology that surrounded him in the ICU. I would come in this night because although the patient would be there in the morning, this young nurse would not. She would have finished her shift and gone home, still burdened with a patient who was opting for something that contravened everything in her training. Preserving this man’s life tonight and tomorrow night and the next was more than her job, it was her mission. This was what she was trained for and letting go did not appear to be in her vocabulary.
The patient was a farmer from a rural community two hours west of the city. For months his life revolved around dialysis. Now his lung cancer had metastasized to his bones. He was dying and he knew it. He understood his options; stay tethered to the machines and inch along a few more days or weeks racked with the pain of bone cancer and the sensation of slowly drowning from lung cancer or die of kidney failure. He did not see his choice to end dialysis as choosing death, death was a given. He was choosing a natural death, one at home surrounded by family, not machines. He knew if he remained in the ICU few would make the four hour round trip from his home to see him. Dying was not a choice. How and where he died was.
Ray did not die peacefully as planned. A couple of days after his decision, his sons insisted he receive dialysis. Toxins had built up in his system, causing confusion. His confusion invoked the right of his health care agents, in this case, his sons, to step in and make medical decisions in his behalf.
Ray woke up post dialysis and back in the hospital madder than a hornet. What had we done? He reaffirmed unequivocally his decision to stop dialysis immediately. A few days later, confused and unable to make decisions for himself, his sons stepped in again and Ray received dialysis.
Inexplicably, we let this happen, twice. The hospital staff felt whip-sawed, Ray’s sons were angry and suspicious, and Ray felt betrayed and vulnerable. My next page was an ethics consult with Ray’s sons.
Its hard enough to stand in our own shoes and feel the crushing pain and grief of our goodbyes. Ray’s sons’ demand for dialysis seemed obvious to them. How could it not be the best choice, the only choice? Why would anyone say goodbye today to someone they love when they could push that goodbye off for days, maybe even weeks? They saw the hospitals willingness to acquiesce to their father’s wishes as somehow tantamount to “killing him.” For Ray’s sons, dialysis constituted necessary care and our refusal to provide this except under threat was unconscionable.
Ray saw the fiasco differently; we were hiding behind legal adherence and tacitly claimed neutrality. But there is no Switzerland in complex moral medical issues, no neutral ground to stand on. We owed it to Ray and his sons to help them wrestle with this decision. Overwhelmed by pain, grief and loss, and unfamiliar with how to navigate a complex medical system, Ray’s sons did not understand the choices they are making with the same clarity the medical staff did. They were doing the best they could; they believed they were advocating for their father with an indifferent medical team.
Ray’s sons would feel no less grief and loss if their dad survived another week. In a cruel twist, the extra time had the chance of increasing their grief and guilt; Ray would endure significantly more pain and suffering and he would suffer alone, isolated in an ICU without the benefit of family two hours away, family that could hardly afford the time or expense of a four hour round trip when farm chores and farm animals demanded daily care.
Through tears and conversation Ray’s sons began to realize Ray was choosing them, not us. He was choosing to die surrounded by people he had loved on the land he had farmed and would be buried. It was them he wanted, the voices and gentle touch of his sons, not the hum and alarms of machines when his oxygen level was too low or his blood pressure dropped.
Not all of us will have a choice in our final act; fewer still will have witnessed the gentle art of letting go. When asked about how we wish to care for a loved one, we, like Ray’s sons, may reflexively answer, “do everything,” not understanding what this means. We may think “everything” surely is the best option, the compassionate choice. But compassion is not about kitchen sink care, throwing everything at a problem and saying we did everything we could. Compassion at its core is stepping into another shoes, looking at life through their eyes and taking action based on their perspective. Compassion sometimes demands we step into hard conversations, share our perspective and look through the lens of another. Compassion is a willingness to fight for our patients when they no longer have the strength to fight for themselves, understanding that some days, death is not an enemy we can defeat. Sometimes our most compassionate act is simply to be present, listen and let another gently let go. 0963251e5