“I’ve got a patient for you, and she’s pretty sick.” It was the EM physician, calling me with another patient to admit — my fourth patient in the last hour. The patient was 89 years old, with dementia, living at home. The family reported over the phone two days prior she was eating, walking, and talking. Now, she was not following commands, not talking, and refusing to eat. Her work-up suggested this may be the end of her road: septic, with bilateral pneumonia and sodium 15 milliequivalents per liter above normal. She was also in renal failure with a heart rate of 130. “She is a DNR, but the home health nurse recommended the patient go to the ER.”
I became anxious hearing the physician tell me about this patient. In hospital settings, this patient account may be typical. As hospitalists, we can become numb to critical illness and the toll it takes on the patient and their families. These patients, however, always strike a nerve within me. I paused before I responded, lost in my own thoughts. Do I have to admit another dying patient tonight? Wouldn’t the patient be more comfortable at home, surrounded by her loved ones, rather than being hooked up to machines, alone, in a windowless room?
Why can’t we die in peace?
It’s a question I wrestle with frequently. As a person living with focal segmental glomerulosclerosis, I’ve confronted thoughts about my own mortality. Would I want to be poked and prodded several times a week for dialysis treatments if my renal function declined in the future? Maybe, I would reason, if there was a chance for a transplant. If not, then let me go peacefully. It is so easy to say what we would do when things are going well, but would I still want to die peacefully if I really needed dialysis?
I know that if I struggle with making advance directive decisions as a physician, I can only imagine how difficult is is for a layperson. Still, my impression has been that many times families push patients to prolong life, despite the patient’s wishes.
As a species, I would argue humans are optimistic in nature. Which is why, despite ostensibly obvious long-standing physical and medical decline, many patients with critical illness believe they will return to their previous level of function. As physicians in the hospital setting, we can exacerbate the incongruence between the patient’s wishes and their actual ability if we fail to engage in open conversations with the family and patient regarding their goals of care and expected level of functioning. In doing so, hopefully patients and families will be more likely to accept their current condition and die in peace. Leaving it for our primary care colleagues to address in a 15-minute visit is very challenging.
After I came out of my pause I asked, “Does the family know what condition the patient is in, and would they like her admitted?” I knew that the patient may very well pass away in the hospital if she was admitted. To my astonishment, the family and patient already had a plan in place — for just this type of event. “The daughter has power of attorney and is en route to the hospital. The patient would not want intubation or CPR.” The daughter drove from three hours away to see her mother. When the patient had capacity she firmly told her family she did not want to die in a hospital. When her time was near, she wanted to go home and die surrounded by her family.
The EM physician advised he would call me back when the daughter saw her mother. I received the call as I was about to see another patient. He told me the daughter and family did not want admission and would honor her mother’s wish to die. She died a short time after returning home, surrounded by her children.
I wish every death I was involved in could be so worthwhile. It was also surprising for a family to have a plan in place and actually stick to it. To the family’s credit, their plan was laid out several years prior, when the patient was in reasonably good health and mind. And all the patient’s children were on board. Therefore, when she presented to the ER critically ill, the family could focus on spending one last night with their loved one — not agonizing over life and death decisions in a panic.
Therein lies the irony: spending our last days hooked up to machines allows our loved ones to see us. But is it worth the trauma of seeing a family member die in a cold, unfamiliar place? I would say not.
How do you talk to families about end-of-life care? Share your tips in the comments.
Dr. Freeman is a family physician and hospitalist with the Hospitalist Associates of Virginia, as well as a physician at Pathways Residential Treatment Center. He graduated from the University of Louisville School of Medicine and completed a residency in family medicine at VCU/Fairfax Family Practice. Prior to joining the hospitalist group, he was the Director of Adult and Family Medicine at Johnson Health Center and a National Health Service Corp Scholar. His interests include addiction medicine, primary care management of mental health disorders, and patient and family communication. Outside of work he enjoys spending time with his wife and three children, as well as real estate investing. He is a 2020–2021 Doximity Op-Med Fellow. Dr. Freeman has no conflicts of interest to disclose.
Illustration by April Brust