Martha is a vibrant, witty woman. She seems a bit nervous sometimes, but she loves to chat. She is always in a common area, sassing the staff or trying to talk to other patients. When we talk to her, she jokes about her messy hair, and then she reaches up, cracks her endearing sideways smile, and attempts to fix it. During my first few visits with Martha, we caught her in a state of self-awareness and self-acceptance.
Then, Martha began to tell us about how her daughter moved away with the grandkids. How her daughter left her. A few weeks later, she mistook us for her grandchildren, berating us in a hoarse voice: “how could you do that to me?” Her breath caught in her throat. “How could you do that to me?”
She eventually returned to her normal state of self-deprecating humor and characteristic chattiness. But as we were leaving, she called us back. She had never done that. She was alone in her room. We had never left her when she was alone. She had always been in the common area. I thought about her words earlier: how could you do this to me? We wheeled her to her usual spot, and she began speaking to another patient. “Will you come over Patty?” she asked. Patty did not respond. She pleaded, reaching out her hand, “Please come over Patty, please come.”
I don’t know if Martha’s daughter truly did leave her or if that was confabulation. But I know her pain, her fear, her loneliness was all real. It was almost tangible, feeling thick and heavy on my ribcage, rising up my throat, lingering in the air. I recognized it. It is the same loneliness I sometimes feel in my first moments of consciousness when I awake, or in the last moments of clarity before I fall asleep. A profound sense of alone.
I share this to make the point that in life, as near death, these feelings are present. The need for other people is essential for the soul. The care we show after death we must also provide in life. Even when surrounded physically by others, a patient can still feel profoundly alone; sickness can be a powerful alienator. So perhaps it is the work of the doctor-scientist to take care of the body, but it is also the work of the doctor-caregiver to care for the soul.
This is one of the most important lessons I’ve learned from my patients: to ease the sense of loneliness that lingers near death. To be there not only physically, but in soul. To start a conversation, reach out and hold their hand, read silly lines from Dr. Seuss books. These are the things that clothe the soul, that bring warmth and comfort, that layer it with life, even if only for a little while.
“We have to go now, Martha.” This is where we leave Martha, hand outstretched. Letting go is the hardest part. I wish that Martha would not feel so alone. I wish I could cure it, envelop her soul with everlasting, infinite warmth. This is one of the hardest things to accept in medicine. There is no absolute cure. I’ve often heard medicine described as putting off death. We cannot eradicate death; we can only make the life which comes before it better, for as long as we can. The same is true for hospice care— we cannot prevent the loneliness, sadness, pain that comes with death. But we might emphasize the sense of release, the comfort, the stillness, the peace that perhaps comes with it. At the least, we can provide a temporary respite for the soul bared in the face of death and loneliness.
Perhaps as change is the essence of life, constancy and peace is that of death. This discussion in particular enters a spiritual realm, which is unique to each individual. I am not religious or spiritual; I consider myself a scientist. And in science, a soul doesn’t make logical sense. But how else can I understand Martha’s pain? How else can I begin to understand myself?
I do not know if the soul is permanent. If it is, I do not know where it goes. If it is not, I do not know what happens to it after death. It seems to me that the state of the bare soul is one of solitude and vulnerability. And bravery. But that implies that it is forever alone. Maybe that is too cynical. Maybe it is more so that the soul is simply at peace after death. That it is calm,
perhaps in solitude, but content. But this is speculation. In the end, I do not know.
What I do know is life’s constant oscillation between joy and pain. This is Dr. Puri’s lesson of impermanence. She laments that life is finite, but finds solace in the fact that suffering too is finite. What I know is that I cannot prevent all suffering, but I can provide a respite, I can bring ephemeral warmth to my patients’ lives.
“We’ll see you next week, okay Martha?” The joy and warmth and solace I can provide may be fleeting but so is suffering and pain. “We’ll see you soon.”