Loneliness of Visiting

Article in New England Journal of Medicine by R. Srivastava
This hit home with me and thought it was thought provoking and put words to the tension and frustration of medicine and of the care of the sick.


“The problem is the poor chap is lonely. If they sat with him a little more, they wouldn't need to call us as much!” My harassed intern is venting her frustration with Mr. Wilson's relatives. The 76-year-old man has languished in the hospital for the past 3 months, a resident of practically every major unit in turn. He was first admitted to Surgery for an emergency laparotomy, which revealed bowel cancer. From there, he went to Rehab for a short stint. But he developed pneumonia and was transferred to the Medicine unit, where he needed an isolation bay. When he became agitated, the night resident gave him haloperidol. But he became sedated and, unable to find his call bell or attract anyone's attention through the closed doors, he got up unassisted — and fell, fracturing his hip. Ortho took him to the operating theater, after which he returned to Rehab. Two weeks into Rehab, his abdominal wound dehisced. So he is back in Medicine for antibiotics and wound care.

We, his medical team, sense another disaster lurking around the corner. His notes have spilled into another volume; his name tops the list of long-stayers, and although we try not to contaminate him with our sentiments, a certain pessimism clings to us. Just yesterday, I found myself telling the medical students, “Every day he spends here he is at risk for a new complication.” It was the most relevant teaching point I could come up with.

Mr. Wilson belongs to the diminishing category of people who have “never been to the hospital until this happened.” Now, he feels battered by his circumstances. He has no appetite. The wound is malodorous. His arms are bruised from regular IV changes. The repaired hip feels stiff. To the well-meaning psychiatrist he carefully explains the difference between being depressed and finding the situation depressing, though lately he seems even more withdrawn. He answers in affable monosyllables. Often he just listens passively, not bothering to protest or engage. His transformation from active citizen to dependent patient is complete.

Mrs. Wilson, though pleasant and concerned, is an old 85, troubled by an osteoporotic spine. Her daughters used to drive her in and sit with their father, but the visits have gradually become shorter and fewer. They have full-time jobs and families.

“Why don't they come anymore?” I ask the intern.

“I don't know,” she muses. “It's almost like they have stopped caring what happens.”

What happens next in my life seems to have occurred almost by design: “I have bad news,” an acquaintance phones to tell me. “Brad had a stroke — he's in the ICU.”

I have known Brad since my student days. Alarmed, I rush in. He lies in intensive care, intubated and senseless after undergoing emergency neurosurgery for a brain hemorrhage. His head is bandaged, and there are tubes everywhere. The ventilator displays reassuring numbers, but an intubated patient dependent on a machine to draw breath seems the epitome of vulnerability. His blood pressure is precariously high. A drain tube snakes out of his skull. A urinary catheter hangs off the other end of the bed. There are multiple IV lines, a nasogastric tube, bulky compression stockings on his legs, mittens on his hands. Even with his substantial build, Brad seems dwarfed by the surrounding paraphernalia.

Visiting on the days that follow, I edge my chair close to his bed. I say a few words, self-consciously wondering whether he can hear me. His extubation is the first opportunity to assess recovery. To everyone's disappointment, he exhibits unilateral neglect and excessive agitation. Within a day, he is diagnosed with pneumonia. It is impossible to ascertain whether he is agitated owing to pain, pneumonia, or the stroke.

The fog in his head seems dense. Even without sedation, he can stay awake only for minutes. If you stand in front of him, his gaze might meet yours, but it takes the eye of faith to read recognition into it.

“Take my hand,” I urge. Sometimes I imagine a weak squeeze in return, but other times his hand falls limply to the side. The effort of turning in bed is too much. His face becomes red and flushed as he rests back, defeated.

An uncomfortable witness to his situation, I reach reflexively for my phone. But I had to turn it off, so I cannot go through my messages and pictures, which are months old and of no consequence but would make for an easy distraction. My newspaper is unwieldy in the small space. The precautionary gown and gloves makes it even more impractical to hold Brad's hand. A touch through powdery gloves feels slippery in practice and intent. I look up, but there is not even a muted television screen to stare at mindlessly. The nurse busies herself with the next round of medications, and we make small talk. I tell her Brad and I go back 20 years. “That's special, Brad!” she enthuses. He looks at her blankly and innocently. My heart sinks. It seems unkind to leave but painful to stay.

And so it is during repeated visits to Brad that I realize just how difficult and lonely visiting a patient can be. In fact, the sicker and needier the patient, the harder it is. Sitting with Brad, with neither conversation nor technology to distract me, I am forced to consider the vagaries of life. There we were, only 2 weeks ago, relishing lunch on a patch of green and watching my children bounce on the trampoline. For all I know, we may have had our last full conversation. As I take in his tired body, I fear what lies ahead for him. Will his pneumonia worsen? Will his hypertension abate? Will he be able to recall the countries he has traveled to and the books he has read? No doctor knows. No test can tell. To be in the powerhouse of medicine and yet be stumped by these questions is maddening. Brad's fate could be anyone's fate — it is an introduction to one's mortality, and it gives pause for thought.

And slowly, I see why it might be easier to just make phone calls from the safety of one's home than to be witness to a seemingly unending stream of medical misfortunes. Or why it might seem like a good idea to slow down the visits or find a dozen other things that take precedence over visiting someone in the hospital.

In response to my expectant eyes one day, Brad's doctor summarizes his progress. Her first five sentences are laden with medical jargon, which I follow silently until she halts. “I am sorry — are you a doctor?”

“Yes, but I am here as his friend.”

“OK, so you understand.” She relaxes and continues her summary.

In fact, I have many questions and even more worries, but with her feet already pointed toward the door, I feel like an intruder.

I would like to deny it, but in her, I see a reflection of myself and my colleagues, and it makes me feel ill at ease. I wonder if we become so accustomed to speaking in jargon that it becomes the dialect of first choice. How little must patients and their relatives really understand of our attempts to communicate with them. How many cues are missed on an average ward round? Could the way we talk make relatives feel uncomfortable instead of involved?

My mind goes back to the Wilson family. Their reticence now seems somewhat easier to understand, their silence easier to sympathize with. I can't remember the last time someone arranged to sit down with them, although many teams diligently flock past his bedside every day. I am confident that our pessimism is matched by their lack of empowerment. I realize that their puzzling reaction to illness is not so much selfishness as self-insulation.

I am not quite sure yet how I will teach my young intern the difference, but I feel lighter for knowing it myself.

a bit of the past

It's one of the more familiar places in LA. The rooms all looked down to a central "recreation room." It had a unique smell to it, and the air was california air. The noise routinely kept us up at night, along with the racing thoughts, stress and anxiety of that month. i remember the piano that I had to bribe the manager to unlock for me so I could play it to unwind. I remember walking to the pie house, the grocery store to track down squirt, and the hospital. I remember the busy traffic racing by on Santa Monica Blvd, and the car rides between CHLA and USC with my grandparents to visit much grumpy father and all too cheery uncle, both post-op. I remember pacing the halls walking on only one color tile at a time while I was banned from visiting in the ICU. I remember trying to find an internet connection to update Ross' blog for people back home back before the days of wireless. I remember waiting. I remember the waiting room of the hospital, I remember the lobby, I remember the phone that bridged the windowed walls of Ross' room which was my only form of communication with him for 2 weeks.

Being back in Ronald McDonald House (albeit a different one in a different city) and walking across the street to hang out with my brother brought a lot of old memories back. Ones that I haven't thought about in years. Silly ones too, like taking the bus to the beach with my grandpa and having him make friends with like everyone on it. And walking to the pie restaurant. My grandma "tsk-Tsking" in the backseat as my grandpa navigated the streets of LA. My uncle hauling my miserable dad out of the hospital and us finding them standing outside of USC with IV posts in their hospital gowns. My uncle bribing the nurses to bring him a steak and a glass of wine.

Just a trip down memory lane... A reminder of everything my family has been through in the last decade and how good Gods' been to us.

Home

How quickly a place becomes home. 3 years. I’ve only been in this white-walled apartment for 3 years, but it’s the place that I’m comfortable. I’ve gotten so spoiled with getting to come home and sit on the floor of my best friend’s room while we talk about our days and life. Our messy cupboards are evidence of a busy kitchen. A wreath is always on our door. My roommate makes our house festively Christmasy every December. I love thelong walks around the neighborhood that have built some of my dearest friendships through discussions on family, faith, and past and future. The impromptu roommate dinners and movie nights. The particular spot on the particular couch where I do my devotions each morning. The windowsill that the cat perches on. Lily and Gil racetracking around the living room, stealing each other’s food and their perfect ‘sibling’ relationship. My long runs on winding, hilly roads in rural Ohio with the cars and the cows.

But when it comes down to it, I can’t believe that in a few short months my roommate of 3 years will be in Columbus… Iam going to miss telling her basically about everything in my life. I’m going to miss the level of community and friendship. I went to see my apartment for next year and am so stoked about the roommates I’ll have and they are a total God-send. Such a blessing and I think it’ll foster great friendships! And I’m beyond excited about how it all worked out so quickly. But as I stared at my new ‘resident application’ I was sobered to think about all that will change over the next 6 months.

Little children

So.. after my first day of 8 weeks of pediatrics, I can say almost with certainty that pediatrics is not my passion. I like kids in real life. just not in the medical field. The commotion during the history, the crying when you're doing a physical exam, and not actually being able to talk with most of them... when it comes to medical stuff, I just think I like adults.

I found myself fascinated by the parents today:

The father who I immediately judged as I walked in the room by his loosely fitting pants perilously hanging from his hips, the long hair and the unsmiling demeanor. But as I watched him throughout the interview I was impressed with how loving a father he was. He seemed to always know what his nonverbal daughter needed~he suctioned her airways, he managed the feeding tubes and he lifted her weak body into his arms to hold her safely to himself. I saw his stressed and sick child crumple peacefully in the security of his arms.

Another mother came in with her 4 year old daughter. She was a single mom, frazzled, sleepless with dark rings around the eyes on her bare face. Her hair pulled back in the pony tail that tells the tale of a woman with no time for herself. She was harassed and short tempered and had unending exhaustion. I wanted to take her aside and know how she was doing. How she was holding up in the chaos of her life... And I wondered what happens when she lost her last straw of sanity...

I think I would be a pretty sucky pediatrician.