Helen was a renowned lecturer on Whitman, Dickinson, and Frost, and the youngest professor of American poetry to be tenured at her university. But by the time I met her, she was no longer the assured professor who delivered inspiring performances to her students. When I admitted her to the hospital, she was a 56-year-old female with aggressive glioblastoma multiforme, an incurable tumorous cranial interloper that was literally squeezing her mind from within her own skull.
She could no longer recite poetry, but along with her husband Charles (both names have been changed), she was able to answer questions about her symptoms and medical care. She was being admitted with nausea and severe headaches from the cancer crushing her brain. It had been nine months since her diagnosis, and even though the end was near, until me not a single doctor had asked her about her wishes for medical care at the end of life.
“What do I want?” she said. “I just want to be surrounded by my books of poetry.”
“I am sorry,” I said. “What I meant was, what do you want the goal of your care to be?”
For the next hour I introduced a vocabulary as foreign to her as spondee and trochee were to me. Life-prolonging treatment and CPR, ventilators and intubation, DNR and DNI — terms that she would need to learn quickly. Unfortunately, I was trying to teach her a new lexicon in the midst of the haze of nausea and hospitalization.
Dazed and confused, they looked at me blankly. Words often fail us in medicine. How could I explain these abstract ideas and treatments? Most patients think hospitals and medical interventions look like what they see on television where most survive CPR beautifully; the truth is most people with advanced incurable cancer do not do well with these interventions and often suffer at the end of life.
Finally, I tried a different approach. “Do you mind if we take a walk through the ICU?” I said.
If words failed me, perhaps seeing the intensive care unit would help. Seated in a wheelchair and accompanied by Charles, Helen got a tour of the ICU, where she saw an intubated patient on a ventilator and a patient having a large intravenous line placed. Her decision-making would be informed by what she saw, instead of having to imagine what my terms really meant.
When we arrived back at her room, she looked at me and said, “Words, words, words. . . Angelo, I understood every word that you said — CPR and breathing machines, but I had no idea that is what you meant.”
I was reprimanded by the ICU staff for bringing Helen and her husband on that tour, but I was quickly forgiven. Evidently, many felt, like me, that patients deserve to be educated in order to make informed decisions about end-of-life choices.
. . .
More than a decade later, I think about Helen often. Today, as an attending physician who cares for patients with incurable diseases, I still take many of my patients on tours of the hospital and of the ICU.
Now, though, my tours are virtual.
I, along with a loose network of 100 physicians, patients, and families from around the country, have created a library of digital videos to better inform patients about their medical options as they approach the end of life. We have created videos for all the leading causes of death — including heart disease and dementia — and have tailored the videos for each disease. Video decision aids empower patients with the knowledge needed to make informed decisions by providing the facts about medical care and standardizing the information patients need to know. All the videos undergo a rigorous review process and provide a balanced review of options for patients and families.
We have studied these videos in randomized, controlled trials, and the findings are revealing. When patients use the videos in making decisions about medical care, they are more informed about their decisions. And when they are more informed, they tend to want to avoid aggressive interventions. They choose to die in a manner consistent with their values.
In one of our studies of patients with incurable cancer, people who did not see the video were generally not knowledgeable about their options. Three-quarters chose to die in hospitals. However, among patients who viewed the video and were fully informed about their choices, over 90 percent preferred to forgo aggressive interventions to die at home. This is also true for patients making decisions about advanced Alzheimer’s disease, patients being admitted to nursing homes, and even surrogates making decisions for their loved ones.
Videos can improve patient-doctor discussions and better inform decision-making. When people are better informed, most prefer to avoid invasive procedures, yet we doctors routinely provide unwanted care at the end of life. But, no one is served by providing care that goes against an informed and competent patient’s wishes.
Some may argue that videos simply manipulate and coerce patients with images, but the patients in our study would strongly disagree. One of the most remarkable findings of our studies is that when asked if they would recommend the video to other patients, more than 95 percent said they would recommend the videos. When was the last time more than 95 percent of patients recommended anything in medicine?
Some people have accused me of advancing video decision aids to decrease cost. I cannot deny that a patient-centered approach may indeed lead to decreased costs — and this is a reason to be vigilant about the way they are used. Potential cost savings must not overshadow the primary goals of videos, which are to improve quality, patient-centeredness, empowerment, and ethical outcomes. When a patient opts for aggressive treatment after being fully and truly informed, then this choice should absolutely be embraced.
But, I have seen that many patients are not informed, and I have seen that relying on verbal means of communication is prone to failure. When informed, most people with an incurable illness prefer to limit aspects of their care. The truth is that much of the high cost of medical care at the end of life is really due to a failure of communication. I cannot see how an intervention that first and foremost leads to better patient-centered health care, and that happens to lower health care costs, is anything but a good thing.
Today, there are 5,754 registered hospitals in this country — only 35 of which use the videos through the non-profit foundation that we created. That leaves 5,719 hospitals, including many in Massachusetts, that may not be providing the type of care that people want at the end of life.
. . .
Had I not taken Helen and Charles on a tour of the ICU, I am certain that she would have ended up intubated on a breathing machine — procedures that she did not want. Instead, after their tour, Helen and her husband decided to forgo invasive treatments and spend their remaining time together at home, with appropriate nursing care.
Weeks later, I was still thinking about them as I was finishing breakfast at a diner after a long call-night as a resident. As I read the Sunday paper, my eye caught the title of one of the obituaries. It was Helen’s. The story was three columns long, a panegyric written by a former student. I was happy to learn more about her life and accomplishments, but felt particular peace of mind and fulfillment from the lines: “. . . renowned poetry scholar, died yesterday at her home. . .”
She died with Charles at her bedside, surrounded by her books of poetry, as was her final wish.