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I’ve been a practicing physician for 20 years. In this series, I share some of the best practices and helpful phrases I’ve learned for talking about bad news and end-of-life issues with patients. This time, I’m discussing how we should discuss the dying process.
“Can’t we start him on dialysis?" a family member asked. “What about a kidney transplant?” another suggested. “I’ll give him one of my kidneys tonight.” All of the adult children in the room nodded. All of them were willing to for a parent.
But their suffering would be pointless. The parent in question was being eaten alive by widely metastatic cancer that had laughed at all the treatments the medical team had thrown at it. Open cancerous sores covered about a quarter of her body at that point. And not surprisingly, her body couldn’t fight against such an overwhelming disease.
She’d stopped eating. Drinking. Her blood pressure had tanked. And her kidney function had dwindled to nothing. I saw only 10 ml of urine in her urinary catheter bag. 10 ml since when? I wondered, but it didn’t really matter. She was dying. What would be my “magic words” in this situation?
Demystify Death
“Don’t be afraid,” I said. “When your mother was lucid, she told me she wanted to die peacefully. That’s what kidney failure does. Toxins build up. Patients just, slowly go to sleep. There’s no pain, there’s no fear. I don’t want her to die—I don’t want to die myself—but we all must, and when we do, kidney failure is the best way. I can’t stop her from dying, but if I put her on dialysis, I’ll have to order painful procedures, and then whatever she dies of in the next couple days will be worse than dying of kidney failure.”
I provide details, if asked, but I prefer not to: suffocating from respiratory failure; dying of overwhelming infections; awake and aware of cancer pain until the last hours. I stay direct and honest: “We can replace kidney function with dialysis for some patients, but we cannot do that for your loved one because her kidney failure is a symptom of her dying process.”
Patients and families want to know and need to know, more about death. We used to see death in our own homes. Relatives died in the home, and often, they got buried in the yard. Early Americans knew death. Now we pack it away to the hospital, fight against it heroically even when it’s unavoidable. But there’s an alternative: Just talk to people.
What Is Dying Like?
If someone is dying of liver failure, the story I tell them is similar: toxins build up. You’ll go to sleep. If someone’s dying of respiratory failure, it's the same deal with a twist: The toxin is carbon dioxide, but the risk is of suffocating until you lose consciousness. I emphasize the ready availability of morphine to control that shortness of breath.
As I make the patient comfortable, I reassure the family that the potentially scary things they see are normal. “We lose hunger and thirst when we’re sick. She doesn't have to eat. She has to focus on more important things, and that’s what her body is telling her now.”
Or: “Cool and mottled skin is normal at this stage of dying. She’s directing blood flow to vital organs instead of her skin. She could pass at any time, or she might live many hours still.” I explain how the death rattle means a patient is so deeply asleep they don’t feel their respiratory secretions, so they’re beyond the point of suffering—and always add, “but let’s give some more morphine to be sure.”
And last, but not least:
“The secret to the care of the patient is caring for the patient.”
Dr. Francis Peabody spoke those words in 1926, to the graduating class of Harvard Medical School. A year later, he died of the cancer he knew would take his life. He was 47.
I didn’t think of his words as I counseled my patient with terminal breast cancer—the young mother with breast cancer, to whom we were breaking the bad news that she needed to change her code status and enroll in hospice, back at the beginning of this series on “The Magic Words.” But I had considered them often, I believed them, and I used them.
“There’s absolutely nothing we can do for you,” the oncologist said.
These words are neither true nor helpful. Seeing that the oncologist was well-intentioned but less skilled at these discussions, I took over. I immediately did several things. I leaned forward (always have these discussions seated). I put my hand on my patient’s forearm; touch communicates caring. And my tone and my expression said I cared. I was suffering with her. Certainly, *I* didn’t have cancer or pain. But I cannot have these meetings without feeling awful for my patients and what they are going through. I have tissues ready—for my patient, and for me, because I usually shed tears in meetings like these.
Is this the right move? I believe it is. I’m not an incoherent mess when I work, but I couldn’t listen to that young mother talk about leaving her kids without shedding some tears. At times like that, I think back to a patient who died of an abrupt, brutal infection in the prime of his life. A relative was there when he died in the ICU despite literally every therapy we could throw at his illness. He wasn’t getting CPR because he’d failed maximal therapy already. His blood pressure dwindling away to nothing was a sign he could not be saved. But while the doctors knew this, his relative felt like she would scream, wondering why nothing was being done. Later, she wrote about how her closure came when she saw one of the junior doctors weeping openly: “That’s when I realized there was nothing else to be done but say goodbye.”
Thanks for reading. It’s been quite a journey and privilege taking care of amazing people at some of the critical and vulnerable moments of their lives. I hope these pieces have been helpful to those facing cancer and other serious diagnoses. In the final entry in this series, I’ll finish with some reflections… and how a colleague taught me we *can* beat fatal cancer.
