I remember how he looked: thin-skinned and pale like parchment. By this point, “Jim” hadn’t any oral liquids for about 12hr and his mouth had a thick and viscous film behind cracked lips. His eyes remained sharp. He spoke with the compensated effort of chronic bronchitis. Each breath a few gasped syllables.
Jim told me that he no longer wished to live. To this end, he decided to no longer accept any medications, to eat no more foods, and to drink no more liquids.
I told him this was a hard way to go.
He said, “I thought you’d say that.”
When I saw Jim, he was on Day #58 of his admission with no sign of discharge. His 60yo body lay in the hospital bed, unable to walk or take care of his daily functions. Foley cath through scars and strictures required urology consults. A stroke years ago weakened Jim’s left side and his speech never fully recovered. Decades of smoking left him breathless.
Then, he told me about the broken relationships left in his wake. No contact with his adult children, who have children of their own. He’s never met his grandchildren and doesn’t suppose that he ever will. An ex-wife across the country. A sister across the other way. No one to sit with him as he slowly burns out.
In tough cases like these, the treating medical team consults the psychiatry service to make an objective determination: Does this patient have capacity? Can this patient make their own medical decisions?
If so, then their wishes need to be respected, even and especially if the treating team disagrees. We need to counsel them on the possible consequences of any decision, but if they have capacity, then they are the captains of their own sinking ship.
If they do not have capacity, then usually next of kin takes responsibility for medical decision-making. If the next of kin do not want anything to do with the patient, then things can get complicated as with Jim. Does the hospital take legal guardianship? If so, they will err on the side of action and life, always.
“So what do you want to do with him?” My preceptor asked for an assessment and plan after my presentation on this psychiatry consult case.
“Well, what do I want to do with him, or what does a psychiatrist employed by the Lehigh Valley Health Network practicing in the state of Pennsylvania do with him?”
I thought he retained capacity. In some ways, I think that the attending agreed. Unfortunately, Pennsylvania is not a ‘right to die‘ state. This means that the medical system keeps people alive, except in specific palliative care settings with terminal illnesses. This man did not have a specific terminal illness. He had a steady and irreversible decline in his quality of life, but there was no cancer that would end his life in six months. With the power of modern medicine, we could keep his meat alive for another decade, maybe two.
Additionally, because Pennsylvania is not a ‘right to die’ state, as soon as an individual expresses a desire to die, they are deemed to lack capacity. In a literal Catch-22, you are allowed to die if you do not wish to die, but as soon as you express your desire to die, you are not allowed to die.
So, he was deemed to lack capacity and transferred to the ICU following his continuing refusal to eat or drink. I followed his case through the electronic medical records. Most mornings, I would check on him and a few other patients that have left indelible marks on me. Some, I hope that they are staying out of the hospital. Others, like Jim, I hope to find that they had died overnight, finally finding some peace.
Days turned to weeks, and I transitioned from one clinic to another and from outpatient to inpatient psychiatry. Late last week, a fellow student pulled me aside and mentioned that he had seen Jim, also on the consult liaison psychiatry service.
I think Jim left a mark on him, too.
He saw him in the ICU, his health deteriorating after some coffee-ground emesis indicating a lower GI bleed. He continued to refuse medical treatment, wanting no scans and no scopes. The medical team had stuck a nasogastric tube to feed him. Again, we determined that he lacked capacity.
He had stayed resolute to his decision, despite his plummeting health and his immense pain.
Sometimes, I imagine his life during these days in the ICU. Weeks since he had a breath of fresh air. No breeze on his face for months. No evidence for the passage of time and the change of season, just a whiteboard with a date and the constant pale glow of fluorescent lights. The noise and rush of bodies around him. Feeling alone in a crowd.
When I arrived in clinic on Monday, I read in his chart that his sister decided to accept the role of medical decision-maker. She wished to transition Jim to palliative measures. He had been intubated over the weekend following some respiratory distress, and this shift meant he would be extubated and would likely die soon. My heart rose with the knowledge that his holding pattern ended. His death finally within reach.
On Wednesday, when I pulled up his chart, a pop-up alerted me: “You are charting on a deceased patient, would you like to continue?” I sat in the busy nursing station, and smiled. I clapped my hands and could not explain to anyone watching why I was so elated.
Jim finally died.
He died on Day #75 of his admission. I wouldn’t wish his journey on anyone. I am, however, glad that this man was able to pass. Our moment of death can be an expression of independence or loss of control. I couldn’t imagine remaining bedridden for months in a hospital room, staring up at the bleak ceiling without a reprieve in the distance.
Healing has many flavors. It can take the form of curing pneumonia or it could be a quiet end to suffering. There’s no pill to take for a broken relationship. To some, life in a skilled nursing facility is not life.
I wonder about the limits of modern medicine. Is medicine simply extending and furthering life? We battle cancer with tooth and limb, sometimes giving up both to see the next birthday. But isn’t that the modus operandi for a cancer cell? Live and keep on living? Grow and keep on growing? A cardiologist has many tools to wage war against failing circulation, but at what point do you let a broken heart break?
I’ve spent so much of my medical education learning how to fight disease. At some point, I want to learn how to give a good death.
Long Form Sundays
- On the chaos of life (or a stream of consciousness battle with writer’s block)
- On family reunions (or the transition to fall)
- On holes of the heart (or ode to a garbage cat)