“Lou’s” Disease, Sedation, and Physician-Assisted Death

Paul Rousseau, MD1

Perm J 2019;23:19.028 [Full Citation]

https://doi.org/10.7812/TPP/19.028
E-pub: 09/20/2019

I peer through the door before knocking. Don is alone, separate from everyone and everything, like a marginal note in a book.

His body is a stick figure of disease, with bones poking through wafer-thin skin like rising periscopes. His breathing is damp and rattled, despite the rhythmic cadence of a ventilator. Yet his mind, his thinking, is normal. It’s the cruel blight of a disease that allows a horrific awareness of an unresponsive body.

“There’s no veneer,” he once told me. “Everything is stripped away. You’re at the mercy of Lou’s [Lou Gehrig’s] disease; it taunts and teases, humbling the most arrogant. You’re a prisoner in a body that’s pitifully paralyzed, dependent on someone for everything. You can’t even wipe your own ass.”

His wife of 50 years greets me at the door. She forces a smile.

“How’s he doing?” I ask.

“Not good,” she answers. “I think he might have pneumonia.”

I walk into the living room, which has become the dying room. I take his hand and gently squeeze. He blinks his eyes twice, his only way of greeting me. I bend over and hug him; I feel his heart thumping, slight and quick in the coffer beneath his ribs. Throat swabs and suction tubes sit on a bedside stand, as does a note he wrote from his voice-activated device several months ago. I read it, as I do every visit: The doors are walk-less; no walking in, no walking out. And the steps, step-less. No stepping up, no stepping down. And a ramp, fashioned for my wheelchair, sits useless, for it’s a wheelchair I can’t even push. I’m now confined to an electric contraption that skirts about like a deranged robot, bumping into walls, chairs, the dog, anything within the perimeter of its wheels and battery. It may be the primitive substance of my ego, but I refuse to journey into the closeness of humanity—the grocery store, the drug store, the coffee shop—with this scooter-cum-wheelchair. And mirrors, I’ve had them removed; I don’t need—I don’t want—to see this sickly shell of a man. All that’s left are windows scattered about the house, offering glimpses of a hypnotic desert terrain, a terrain I can no longer touch. So alas, with far more years of remembrance than days of future, I find myself flailing hopelessly in a vacuum of nothingness, waiting to die.

With the help of his wife, I turn his bent body to the left side and listen to his lungs. They’re filled with noise; he has pneumonia. He’s suffocating, despite the ventilator.

It’s an existential watershed, a new dystopia: Do we treat the pneumonia, or do we provide comfort, with certain death? I ask the questions individually. He elects comfort, with death. But his wife interjects: “We want an assisted death, you know, assisted suicide.” She tells me she’ll give the medications via his feeding tube. Neither wants his dying prolonged.

My face flushes. She notices my concern. “Don, do you mind if I speak to the doctor in private?” He blinks approval. We step into the kitchen; I lean close and whisper. “I’m so sorry, I wish I could do what you want, but assisted death is illegal in this state. But I can …” She grabs my arm.

“Doctor, no one will know.”

I take a deep breath and slowly exhale. “The hospice will know, and the pharmacist will know. And the hospice and pharmacist can …”

“Can’t you just write a prescription for a large bottle of morphine, like you’re providing him with a good supply so you won’t have to visit as often? Then I can give him the whole bottle through his feeding tube, add some of my Ativan [lorazepam], and when he’s unconscious, unplug the ventilator.” Her desperation and despair are visible. She wrings her hands over and over. “Please, help him.”

“I can’t do that, I’m so sorry. But what I can do is what he and I discussed, and what’s in his advance directive: Gradually sedate him, stop the ventilator, and keep him comfortable until he dies. It wouldn’t be long, perhaps minutes. I don’t think there would be a difference between sedation and assisted death as far as comfort or how soon he’d die. We can admit him to inpatient hospice if you’d like.”

The furrows on her brow deepen; her eyes fill with a storm of tears. “Doctor, he’s dying; what does it matter if we help him along?”

“I agree with what you want,” I tell her, “but I can’t legally do it. We could both be charged with murder and imprisoned. Let’s sedate him and stop the ventilator; he won’t suffer, and he’ll die soon, in comfort. Let’s ask him if that’s okay.”

She begins to sob, her lips quivering. “I promised him, Doctor. I promised him.”

“Let me ask him. I know him; he’ll understand.”

Her shoulders slump. “What can I do, Doctor? You leave me no choice.”

I speak with Don; he understands the legal dilemma and blinks agreement to sedation. An intravenous sedative is started; within minutes, he’s unconscious. The ventilator is tapered and withdrawn. He dies shortly thereafter. He appeared comfortable. I stand bedside with his wife. She is distraught and in despair—she had promised a quick, assisted death, and feels she failed him. I try to comfort her, but she’s inconsolable; my presence and words are unwelcome and unheard. She asks me and the hospice nurse to leave; she wants to be alone with him.

As tears leak down my face, I wonder if assisted death would have provided a more comfortable and quicker death. I don’t know, but I don’t think so; he appeared comfortable, and he died quickly. And though I believe the option of assisted death is a necessary option that comforts many terminally ill patients whether it’s used or not, I doubt it would have been more comfortable, or even quicker, in Don’s case. So, the issues were, at least in part, the sovereignty of choice and the fulfillment of a promise. Still, I have a measure of heartbreak and regret for his wife, for while I provided a comfortable, quick, and legal death for her husband, I provided her with a bereavement beset with guilt and remorse.

Epilogue: Opponents of assisted death argue that intentionally causing death in terminal illness, for whatever reason, is unethical and antithetical to the morals of medicine, whereas sedation, in which death is often expected but not intended, is ethically and morally permissible under the guise of the doctrine of double effect when used to treat refractory symptoms. In this case, as in many, I was conflicted, for the line between the two, if there was a line, was a very thin plait of legality and semantic intent.

Certain details have been changed to protect individual privacy.

Disclosure Statement

The author(s) have no conflicts of interest to disclose.

Acknowledgments

Kathleen Louden, ELS, of Louden Health Communications performed a primary copy edit.

How to Cite this Article

Rousseau P. “Lou’s” disease, sedation, and physician-assisted death. Perm J 2019;23:19.028. DOI: https://doi.org/10.7812/TPP/19.028

Author Affiliations

1 Charleston, SC

Corresponding Author

Paul Rousseau, MD (palliativedoctor@aol.com)

Keywords: ALS, amyotrophic lateral sclerosis, death with dignity, ethicolegal issues in dying, neurology, palliative care, physician-assisted suicide

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