It was a cold December morning in 2015, and Roger was slowly dying. With end-stage chronic obstructive pulmonary disease (COPD), he had been in and out of the hospital for months, each episode worse than the last. Once able to walk to his favorite corner store with an oxygen tank, Roger had morphed into a gaunt skeleton, tethered to his bed by entangling tubes and masks. Time was precious as death closed in, and Roger was wasting it in a lonely, restrictive hospital room.
“He’s not going to hospice,” my nurse practitioner told me during inpatient rounds. “We talked to him, and he didn’t want to hear any of it.”
“Let me try,” I offered.
“Best of luck,” she said with a sigh. “He’s not the easiest to talk to.”
“I know,” I said, taking a deep breath. “I know him from before.”
Then I went to talk to Roger — my patient, my friend.
Roger — to protect his privacy, I’m identifying him by his first name only — and I met during my first year as a medical student at the Icahn School of Medicine at Mount Sinai in New York City, on the first day of the school’s Seniors as Mentors Program. For four years, students were paired with patients 65 and older who volunteered to teach us about medicine from a patient’s perspective. They allowed us to accompany them to doctor’s visits, explore their health in the home and get to know them outside the hospital setting. It promised to be a memorable relationship, and I was excited to see what my patient mentor would be like.
I waded through the hectic meeting hall, filled with a sea of very old patients and very young medical students, to find Roger, barely older than 65, with salt-and-pepper hair and a portable oxygen tank. After 40 years of smoking, he had lost one lung to cancer while the other succumbed to severe emphysema. Through pursed lips and wheezes escaping from his diseased airways, he offered a labored “hello” as we shook hands.
Roger possessed an odd combination of traits: He was extremely intelligent, with great attention to detail, but he was also eccentric in a way that could be off-putting. He would impress me with his extensive knowledge of Thailand, my home country, but in the next breath he would call me “Oriental,” an outdated phrase that made me feel like a physical object from the East. When Roger told me that he did not have many friends and that he was estranged from his brother, the only family he had left, I partly understood why. Sometimes at doctor’s appointments, his obsession with detail and his social oddities would unfold into awkward arguments with doctors about the minute particulars of various treatment plans.
I struggled to clearly define my relationship with him. Because of his age and his off-putting quirks, I did not think of Roger as a friend, and because I was not his doctor, I did not think of him as a patient. It would not be until years later, after I had patients of my own, that I truly understood the gravity of my medical school experience with him.
Several years later at Mount Sinai, I was finishing up a fellowship in geriatrics when an attending physician flagged me down in our clinic.
“Hey, I think you know one of my patients,” the physician said. “You took a really detailed social history of him a few years ago.”
That patient was Roger. At the physician’s request, we looked at Roger’s medical chart together and discussed his case before going in to see him. Having read many impersonal, uninformative patient records by that point, I was reminded of how insightful a medical history can be when it is written by someone who really knows the patient. In my student notes, I’d written down the names of Roger’s parents and where he was born. I’d told a story of how he grew up in the Presbyterian Church and how his skepticism of it led him to become an atheist. I’d even gone into great detail about how Roger played Go, a Chinese board game, probably because I liked the game myself and we used to have long conversations about it. Years of stories came flooding back through the notes, and I remembered Roger.
I remembered him despite the long white beard he’d grown and the bald spots where his salt-and-pepper hair used to be. He remembered me, too, even with a new haircut and a long white coat.
Soon after I happened upon Roger in the clinic, his COPD began to worsen, and he started coming to the hospital frequently. During the first visit, he recovered well enough to return home. But after a few admissions, it was clear that his body was failing him, and the likelihood of Roger returning to the walk-up apartment where he lived alone was getting slim.
As fate would have it, I got to be one of the doctors who took care of Roger during these admissions. Of all the health professionals on his team, I was the only person who had a chance to visit Roger at home. No one but me knew how Roger navigated the oxygen tubing covering his apartment floor, and I began to recognize the significance of getting to know patients beyond the incomplete picture we saw in the hospital. To effectively provide care for someone, it’s important to learn who they are, what they eat, how they breathe.
Being able to visit patients in their homes was the first stage in building this crucial understanding, and this was true for Roger as it was for other patients I had visited at home. However, with Roger, I was able to take the second step of building a relationship with him over the years, and this bond would prove helpful to our medical team during Roger’s inpatient stay. Because he often grew skeptical when discussing treatment details with unfamiliar providers, I became the designated communicator for the team.
When it was clear that Roger’s remaining lung was quickly deteriorating, I went to tell my friend that he was dying.
I walked into his room with my usual greeting, trying in vain to convince myself that this conversation would be the same as delivering bad news to any other patient. We talked about the weather, and I asked permission to discuss the medical updates of the day. When I told him his lung was getting worse, he said he knew.
“What’s next?” he asked. I took a deep breath to brace myself for what was next.
“I can’t imagine how hard this must be for you to hear, because this is extremely difficult for me to say.” I reached for his hand and grabbed it. “Since we’ve known each other for so many years . . . ”
Roger squeezed my hand, and I started to sob uncontrollably. My last shred of composure gave way to waves of overwhelming sorrow. It was hard to tell my friend that he was dying, that I could not save him.
“How long?” Roger asked. I could hear the trepidation in his voice.
“Less than six months,” I answered, my voice shaken by guilt and the feeling of failure.
“I think I’ve heard enough for today,” he said after a long silence. “But I’m glad you’re the one who came to tell me.”
By that cold December morning in 2015, about a week after I told Roger he was dying, a few providers had offered hospice to him, unsuccessfully. Understanding what was important to him, I knew that Roger would pick hospice if he could get past his mistrust and concerns over the details. Here was my chance to help guide Roger through one of the most important decisions of his life, and I did not want to fail.
“I know I can’t fix your lungs,” I started, cautiously choosing my words, “but I am going to make sure that you are always comfortable, no matter what happens.”
He nodded calmly.
I pressed on: “I want to make sure that you will always have help when breathing becomes more difficult, and the best place to keep you comfortable is at inpatient hospice.”
I paused for his reaction.
“Okay,” Roger answered, his reply slow and contemplative. “What you’re saying makes sense.”
I could sense him letting down his guard, relinquishing the skepticism he had toward unfamiliar providers in prior hospice conversations. With relief, sadness, hope — all embedded in a single question — he asked, “Where is inpatient hospice?”
I squeezed his hands. Roger was ready.
With a growing number of physicians working in shifts and a greater demand on them to work in specialized fields, patient care is increasingly fragmented, involving multiple handoffs with multiple doctors. In a 2010 survey, 1,035 American adults reported seeing an average of 18.7 doctors during their lives. The numbers were even higher for poorer and older adults (who reported seeing 22.4 and 28.4 doctors, respectively).
With more handoffs, the therapeutic relationship gets weakened, for both the patient and the provider. According to a 2009 Archives of Internal Medicine article, 75 percent of patients in a Chicago hospital could not name a single physician in charge of their care.
When patients refuse to repeat the story of why they came into the hospital for yet another new provider, I empathize with them. As a geriatrics fellow in the hospital, I usually see patients after they have already talked to emergency medicine residents, emergency medicine attending physicians, surgical consultants, night-float residents, internal medicine residents, medical students, a handful of nurses and numerous patient care associates.
When patients appear skeptical after hearing our recommendations, I empathize with them, too. I’d also be skeptical if I didn’t know the name of the person recommending the next major step in my care.
After following Roger for many years, a few times into his home, I knew Roger beyond his COPD, and he knew me beyond my white coat. Understanding how he made decisions, I presented Roger with a single treatment choice that was in line with his values. When listening to my medical recommendations, Roger not only had the advantage of knowing my name, he also had gotten to know me outside the hospital doors and developed a kind of trust from our years of friendship.
For physicians, the ability to learn about our patients’ lives beyond the traditional care settings is invaluable, and yet our ability to connect with them on a meaningful level is challenged constantly. In medical school, we are taught to apply the same script to every patient, regardless of who they are: Start every visit by asking about the chief complaint, describe every patient beginning with their age and sex. In clinics, visits are becoming shorter to achieve higher productivity, and billing and chart documentation leave barely any time for meaningful conversations.
As we struggle to provide continuity of care despite multiple handoffs, to re-create the joy of medicine amid increasing burnout and to promote a patient-centered approach to health care, the answer to accomplishing all three may lie in encouraging longitudinal relationships built equally in the health-care setting and in the patient’s home. This can begin, as it did in my case, during medical training. A number of U.S. medical schools offer senior mentor programs similar to the one I participated in. Such programs should be expanded to include patients of all ages and should be offered to physicians and nonphysician health professionals alike.
In real-world practice, home visits should be encouraged because they can provide tremendous information on patients’ lives outside the hospital.
Once the provider-patient bond develops, our health-care system must provide an infrastructure to ensure that this bond can flourish and support patients across all care settings. During transitions or hospital admissions, care should always be coordinated with a designated provider, someone on the patient’s care team who has established trust and understanding of the patient over a longitudinal relationship.
On another cold morning later in the month, I met up with Ben, the hospice liaison, to ensure a smooth care transition for Roger. We discussed the details of his care, and I told Ben everything I knew about the man who loved Go.
“Your name carried a lot of weight with him,” Ben said. “You must have known each other a long time.”
“Since I was a medical student,” I answered, as fond memories came rushing back. “I’m glad I got to take care of him. He doesn’t really have a friend to advocate for him.”
“Well, he does,” Ben replied. “You are his friend.”
Sangarlangkarn is the chief of the Center for Healthy Aging at Samitivej Srinakarin Hospital in Bangkok. This article was excerpted from Health Affairs and can be read in its entirety at healthaffairs.org.